| LYMPHLAND |
| This is an outrage, they want her to get really bad off before they
pay for something to maintain her, this is a perfect example where we all need to respond because this could happen to us if it hasn't happened to some already. 'Blackballed' by state of Oregon?: Bureaucrats have forbidden suppliers to sell her medical equipment, local senior says BY STACY D. STUMBO The Springfield News Alma Smith, 70, says the state of Oregon has given her an ultimatum: If, by eating beans and rice for a couple months, she scrapes together $240 to buy the custom support stockings she needs to avoid becoming a bedridden invalid, they will cut off her medical insurance. But after her stockings are completely worn out and she's stuck in bed all day as a result, they will pay for weekly visits from a nurse who will use a surgical pump and needle to remove water from her legs. The state is also willing to pay roughly $1,000 per month for an in-house caregiver, she says. If this happens, the result will be catastrophic for Smith -- and very expensive for the taxpayers, who will be paying thousands a month to maintain her instead of $240 every six months. "I don't want to go to bed," Smith said as she choked back tears. "These may be my last days of standing up, if they have it their way." A $240 lifesaver The bone of contention is a pair of $240 support hose with a difference called Jobst Compression Stockings. Smith has been relying on the custom-fit garments for years to reduce edema and keep her mobile. With them, she can walk around, clean her home, take care of her yard and do everything other active seniors take for granted. Without them, fluid builds up in her legs until she cannot walk. Smith said she is willing to pay for the stocking herself. But in doing so, she risks losing her OHP card and privileges. The health plan is designed for low-income individuals. Smith said officials have threatened to discontinue her coverage on the basis that if she can afford to buy the stockings herself, she doesn't need the health plan. OHP representatives in Eugene could not be reached for comment. Hardscrabble childhood Smith is no stranger to adversity. She grew up in the back hills of North Carolina -- one of eight children, born to a mother who could only sign her name with an "X" and a father who abandoned the family and moved to Roseburg, Ore. "I didn't know how old I was, or even my last name," Smith said, recalling the poverty and isolation of her youth. She would watch school buses pass, she said, and dream about getting on board. "But there was always harvest," she remembered. "I never went to school. It never dawned on me that I could." Still, Smith found a way to get by. She moved to Michigan and worked for Pontiac. She later relocated to Roseburg, where she was reunited with her estranged father, whom she hadn't seen in years. By then, her dad had remarried and fathered eight more children, Smith said. She got a job as a janitor at the Douglas County Courthouse and focused on raising her only son, Tim Jones. She married, separated and moved to Springfield. Stricken with cancer In 1984, Smith was diagnosed with a type of malignant neoplasm, a very rare cancer that was attacking her lower torso. She had surgery to remove the cancer at St. Vincent Hospital and Medical Center in Portland. "My doctor told me, 'When you wake up, you will not be the same,'" she said. During the surgery, Smith's lymph nodes in her legs were removed. A side effect of the procedure is edema, or swelling in the legs. The swelling is the result of the accumulation of excess fluid under the skin in the outside of the blood vessels. Smith's doctor prescribed a Jobst compression stocking, which uses hydrostatic pressure to reduce swelling. "They stabilize the legs so I can walk," she said. "My doctor already ordered my first pair (of the stockings) before I had surgery." Smith said she received the stockings through OHP for several years "without a whimper." Then, four years ago, she was notified it would no longer cover them. "I just want to understated why," Smith said. Tough all over Around the time of Smith's notification, the health plan was starting a series of widespread cuts that were designed to preserve certain types of coverage while eliminating others. Smith appealed the decision in 2002 through the Oregon Department of Human Services. She submitted letters from her doctor and documentation from her physical therapist that supported her argument that the stockings are necessary to maintain her quality of life. DHS Administrative Judge David Lackey rejected the appeal on the grounds that her condition, lymphedema, is not recognized by the Oregon Health Plan. The decision also revealed OHP believed it had been too long since Smith was diagnosed with cancer for that to be a legitimate claim to receive the stockings. Smith said OHP has her blackballed from buying the stockings using her own money at medical supply stores all over Lane County. She is down to two pair. Both are shabby. Both have holes, although she has patched them, it won't be enough to keep them working much longer. "I don't know what to do," Smith lamented. "I guess they won't be happy 'til I'm dead." AT LYMPHLAND WE BELIEVE THAT TOGETHER WE CAN MAKE A DIFFERENCE. WE PETITIONED OREGON MEDICAID WITH A GROUP EFFORT AND SUDDENLY WITH ALL THE ATTENTION HITTING ON THEM, ALMA GOT HER STOCKINGS! I am furious over this ! I sent this article to John Stossel of 20/20 and to the 20/20 staff. They may not find it news worthy but it's worth a try. This needs national attention. This as you say could be any of us or our love one. I am going to search for Oregon's state government officials and voice my opion to them as well . I don't live in Oregon but this is a national crisis...least that's how I see it. cyber hugs, Linda, the chattering magpie good! glad to hear that Linda, we really do need to take action on it. I called the reporter, got her voicemail, and also sent her an email trying to get more information and maybe a contact for Alma. I'm thinking where there is a will there is a way and maybe someone might "gift" this lady with the stockings, along with a letter stating it's a gift so she can prove it to the creeps who denied her. I can't believe they could dictate how she spends her own money! I was furious too when I saw it. I'll let you know what I find out, keep us posted too. Tina Tina let us know if you get a contact with the lady...would love to tell her that some of us out here do care and think this is terriable. I wish I had the cash to "gift" her the compression garments. I've been sending letters to Oregon's state sentors and now on to their representives, congressmen and governor.This should not happen to anyone ! cyber hugs, Linda, the chattering magpie Hi Linda I didn't hear anything yet but will post when I do. I hope she gets some help out of this, thank you for such a great effort! :) Tina u got that right...the politicians can move mountains when it's of "value" to them. cyber hugs, Linda, the chattering magpie Hi Everyone I talked to Alma today, what a sweet woman! She does not have a computer and is quite isolated, and on a very strict budget. The scoop is that they are also trying to tell her that if she accepted the stockings from her sister who would help buy them, that counts as her income and she could be kicked off medicaid. They are trying to tell her how she can and can't spend her money and will not recognize Lymphedema. Alma is going on the Lars Larson show today, http://www.larslarson.com/ if you want to write or call in, that would be super! We need the exposure people! This could very well be us next time if we don't show some effort to help this lady however we can. Tina Hi Tina, Thanks for keeping us in touch with this one. I found this unbelievable but can see now it is all too true. The television show that Alma will be on looks an excellent thing for causes such as hers. I hope things go well for her and she gets her garments paid for. Penny UK I agree with you Linda...whats next, is the state going to come in and appraise any gifts she gets for her birthday or Christmas....this is so ridiculous. Anne Tina, awsome that you were able to contact and speek to Alma personaly. Getting this in the public eye is most definately what is needed. I'm even more furious that she won't even be allowed to recieve a "gift" of the sleeve...This is so wrong... cyber hugs, Linda, the chattering magpie Alma's story gets national press By STACY D. STUMBO The Springfield News Seventy-year-old Alma Smith remembers waking to the sound of whippoorwills in the Smoky Mountains of North Carolina and feeling free. Today -- since authorities from the Oregon Health Plan, conservative talk-radio personality Lars Larson and Fox News' Bill O'Reilly have taken interest in her problems, each day rings with the song of possibilities. Only a week after Smith went public with allegations that the state was denying her access to the support stocking that would keep her from spending her autumn years bedridden, media coverage and public support have overwhelmed her. The Springfield News received roughly two dozen e-mails and about 25 calls from readers nationwide who were eager to help Smith since it reported her situation on Aug. 17. "I've never felt so loved in my life," Smith said. "I'm kind of in shock still." Smith has twice appeared on Larson's radio show and discussed her four-year-long battle with OHP over coverage of her custom-made $240 Jobst Compression Stockings. Smith has used the stockings since 1984, when she was diagnosed with a rare type of malignant neoplasm in her lower torso. When the cancer was surgically removed, the lymph nodes in her legs were also taken. A side effect of the procedure was lymphedema, or swelling in the legs caused by accumulation of excess fluid under the skin in the outside of the blood vessels. Smith's doctor prescribed a Jobst compression stocking, which uses hydrostatic pressure to reduce swelling. OHP covered the garments until 2001. The next year, when her last pair of stockings had worn out, Smith appealed the decision through the Oregon Department of Human Services. She submitted letters from her doctor and documentation from her physical therapist that supported her argument that the stockings are necessary to maintain her quality of life. However, an administrative judge rejected it on the grounds that lymphedema was no longer recognized by OHP and that too much time had elapsed since she had cancer. Allison Knight, assistant section manager for program and policy for Oregon's Office of Medical Assistance Program (OMAP), said she is not sure why the condition was cut from the plan, but said policy changes are not uncommon. "The whole health care system is difficult to navigate," Knight said. Smith alleges the OHP representative involved in her case since 2002 and her medical equipment provider suggested she use a different, cheaper type of garment that is covered by the health plan. However, this type of stocking was not custom-fit and did not go up as high on her body as the Jobst, and lacked proper reinforcement in the stomach area; because her entire lower body is subject to swelling, she said, it would not have worked. When she resisted, the case worker suggested that it was vanity that was preventing her from taking the offer. "Have you ever looked at these things?" Smith said of the stockings. "There's no looking good." Smith said she was told she would not be allowed to purchase the stocking with money she'd saved, or she would risk losing her OHP medical coverage. "That is not the case," Knight said. OHP recipients or their families can purchase medications or equipment that is not covered by the plan without any problem, she said. Knight said there are roughly 700 providers of durable medical equipment that contract with the health plan. Some providers discontinue sales of particular items if the state's reimbursement level is too low. Knight said that may have been the case with Smith's Jobst stockings. It is unclear whether it was the caseworker or the stocking providers who told Smith her coverage was at stake. "We're still continuing to investigate what happened," Knight said. Smith's former case worker is still employed by OHP, Knight said, but now works in a different division. Although lyphedema is still not recognized by the health plan and durable medical equipment like Jobst stockings are not covered, sometimes exceptions can be made, Knight said. Smith's predicament is just such a case. Within the next few weeks, "she will have her stockings," Knight said. Smith acknowledges she is proud, but said her desperation is what finally drove her to seek help from the public. And she's no stranger to struggle. Raised in poverty in the shadow of North Carolina's Smoky Mountains, Smith was denied an education, she said. Her father, who was regionally renowned for the high-test moonshine he brewed, left her and her seven siblings when his wife was laid up in the hospital and moved to Roseburg. "I don't remember much from that time," Smith said. "Some things are too hard to remember." Now, Smith lives with few regrets -- just the sublime notion that people are much better than she ever imagined. Although Smith sometimes struggles with words and frets about accuracy, when her muse visits her simple home on Quinalt Street, she is merely a vessel for what she calls "God-sent" poems. She writes about the beauty of trees, the miracle of birth and the meaning of life. "Maybe I'll write something about this," she said. "I'm so grateful. I didn't feel like I was worthy." Hi Tina....Thanks again. I know once before you gave the number & I did write it down in my e-mail address book but for some reason I could not locate it. I know wearing the stockings is going to be awole lot better for her. People who do not have any med problems do not understand. I know with the stockings people think it's just like a pair of support stockings you can get at Walmart or your local pharmacy. Well, like myself and Alma ours needs to be custom made and that's something that you can not just go in and buy right off the shelf. Mine are the 40/50 and they are like putting a girdle on your legs. That's just how I describe it to people. God................I could never wear a girdle like my grandma did but I guess in a sence I am............I am going to call Alma sometime in the near future. Maybe we can offer some advice to one another or just share stories. Have a good weekend. Later......... Hi Diana Alma had said before I could share her number with anyone who wanted it, she'd love the calls, will send it to you. She's a really sweet lady. GREAT NEWS TINA !!! I KNOW YOU STATED THAT ALMA DID NOT HAVE A COMPUTER BUT YOU DID HAVE A PHONE NUMBER FOR HER . DO YOI STILL HAVE THAT NUMBER? I'D LIKE TO TALK TO HER. I HAVE BEEN WEARING JOBST STOCKING SINCE 1984 MYSELF. THANKS.....................DIANA I'm glad alot of us took the time to bombard the medicaid office and newspaper with calls, letters, emails, etc. If that's what it took that helped her get the garment then that's what we'll be doing alot of! Tina |
| ALMA SMITH |
| MANDY BELL |
| Mandy's dilemma is harder for us because alot of us don't live out of the USA but we are trying. |
RYAN BROWN NOR THE MAYOR'S OTHER CRONIES NEVER BOTHERED TO WRITE BACK TO MY QUESTION OF WHY WAS SHE ALLOWED TREATMENT FOR 2 YEARS BEFORE THE CATS BECAME AN ISSUE AND IF IT WAS PROTOCOL, WHY WAS SOMEONE NEGLIGENT 2 YEARS AGO? ALSO WHEN SOMETHING CONCERNS ANY LYMPHEDEMA PATIENT, IT CONCERNS US ALL AND BASICALLY I SEE IT AS SOMEONE DOESN'T LIKE CATS AND DECIDED TO GET 'NASTY' ABOUT IT. ALTHOUGH WE MAY NOT BE ABLE TO HELP HER CASE, WE SURE VOICED OUR OPINION. Tina, Please find attached council’s press release. I suggest you gather the facts next time prior to making comment, that if you are interested in the facts rather then media hype! If you would like further information, please contact the City of Monash on 61 3 9518 3555. Ryan Brown -------------------------------------------------------------------------------- Dear Mr. Brown, Thank you for your quick response. Why don't you enlighten me to what the facts are then? Is Mandy receiving treatment for her lymphedema? What are the issues with the cats? Sincerely, Tina Budde ----------------- Tina, Thank you for your email. I’m sure you are aware, however if you are really interested in the facts the last place you will start to develop an informed opinion is the media. Rather then sitting in the cheap seats sending emails criticising a system you have no knowledge of I suggest you contact the City of Monash and ask what the facts are! Ryan Brown -------------------------------------------------------------------------------- Subject: Mistreatment of Mandy Bell and her cats! Dear Mayor Morrissey and Council: My name is Tina Budde and I live in the city of Lockport , in New York State , USA . I read the article in the Herald written by Grant McArthur about Mandy Bell and her cats. I am outraged that she is being denied care due to the fact she has cats. I am a lymphedema patient, cancer survivor, and patient advocate. I also am the owner of http://www.lymphland.com website and International support group, as well as a writer for ELymphNotes online lymphedema magazine. I posted the article to my support group and it is traveling to the millions of lymphedema patients across the world as we speak. Also, I will be adding information about it on my international website to make sure all lymphedema patients know the kind of mistreatment that Mandy is being subjected to. First off, not treating Mandy's lymphedema is jeopardizing her health, the complications of not treating lymphedema can be life threatening and are as follows: COMPLICATIONS: 1) Wounds/Re-ocurring wounds $900 to $500,000 2) Infection/Cellulitis $100 to $250,000 3) Infection/ Osteomylitis $80,000 to $500,000 4) Limb deformation cost unknown 5) Reduced Mobility cost unknown 6) Obesity due to lack of mobility cost unknown 7) Amputation $25,000 8) Loss of ability to maintain employment Unknown These amounts are per incident. Since wounds and infection reoccur, the cost of health care results in millions of dollars being spent yearly unnecessarily. The CDC estimates 50% of amputation could be prevented with effective disease management. Second, as the owner of 5 cats and a pet loss counselor for Rainbow Bridge , I can tell you that cats are therapeutic. They are not only companions but studies have shown that people who interact with them have lower blood pressure. High blood pressure goes hand in hand with lymphedema patients. Cats lowering blood pressure is the implication of research presented by social psychologist Karen Allen to an American Heart Association meeting, Her work follows several other studies that suggested pets help control blood pressure. But while previous studies compared pet owners to non-owners, this was the first to look at what happens when a non-owner gets a pet. As a pet owner myself, I can verify that cats are generally afraid of strangers and will hide until they leave. Even at that, with 2 cats, the risk of a health care worker, unless they are allergic, is very low to none. The greater health risk is for Mandy. For years, lymphedema patients have been misdiagnosed, told they are fat and blown off, undertreated or not treated at all, and this is NOT acceptable. We are very angry and disgusted by this turn of events with Mandy and we want you, Mandy, lymphedema patients worldwide, and the whole web to know it. Thank you! Tina Budde Patient Advocate, New York State , USA http://www.lymphland.com Hi Tina, My name is Grant McArthur and I am a reporter with the Herald Sun newspaper. I believe you were trying to contact me this morning regarding my story about Mandy Bell being declined care because she lives with two pet cats. You were asking for Gerald, but as I wrote the story I can only assume you were trying to get hold of me. I am happy to speak with you and provide you with details to contact the council if that is what you want. I can be emailed at this address, or my phone numbers are listed below. Cheers, Grant McArthur Journalist Herald Sun HWT Tower, 40 City Road Southbank, Vic 3006 Ph: (03) 9292 1149 Fx (03) 9292 2112 E: mcarthurg@heraldsun.com Thanks Tina, The person I dealt with at Monash Council is Jodie - her email is jodieh@monash.vic.gov.au She is the person who deals with media inquiries so may not be the most appropriate person to get a message to the mayor, but I'm sure she can either pass your message on or point you in the direction of who is the best person to be emailing. We may do a follow up story today as there has been a huge reaction to the story. As you have taken such an interest in it would you be prepared to make a comment for the story? If so, could you please tell me where you are living, if you are going to write to the council/mayor and if anyone else you know will be writing to the mayor and where they are from. I'm sure our readers would be interested to know that the council was being inundated with emails from people overseas if that is the case. If you could tell me what you and the others are writing it would be much appreciated. Cheers, Grant McArthur. Hi Tina My name is mandy and you read about me over the net im the lady with the cats and am fighting the council about my care I was really surprised to hear you had heard about me I really didn't think I was that important as im just a nobody trying to stand up for my rights and the right of others I hope. So far nothing has changed and to tell you the truth I don't think it will as they have got their backs up because I didn't roll over and play dead and the only way that I think things will change is if people write, ring, and email the council about the issue and people tend to not do any thing if it does not apply to them. I wanted to thank you for your support in my issue and my cats thank you to I hope you are well and keep up the good work. If you would like to contact me my email is diablobell@bigpond.com. kind regards mandy Diablo Pet cats a home hazard: council original article in the Herald Thursday Aug 16 11:00 AEST By ninemsn staff Pet cats are apparently the latest occupational health and safety scourge. A seriously ill Melbourne woman has reportedly been denied home care by her local council until she "isolates" her cats, Gypsy and Diablo. Mandy Bell, who suffers from a brain tumour and lymphedema, told the Herald Sun newspaper her beloved cats had never attacked anyone. "Gypsy is extremely skittish and timid, Diablo is very affectionate." In a letter to Ms Bell, the council said the cats needed to be kept in a separate room when the carers visited "to avoid potential accidents, such as staff tripping or being bitten". But Gypsy and Diablo would fret to the point that they were sick if they were locked up, Ms Bell said. "[The carers] come in and make a fuss of the cats. They do not have a problem with them at all. It is just red tape." Monash mayor Tom Morrissey told the Herald Sun the council would provide personal care if the cats were "constrained". So far, Ms Bell has refused. Before the troubles with her cats, Ms Bell had received in home care courtesy of the council for two years Tina, Thank you for your email. I’m sure you are aware, however if you are really interested in the facts the last place you will start to develop an informed opinion is the media. Rather then sitting in the cheap seats sending emails criticising a system you have no knowledge of I suggest you contact the City of Monash and ask what the facts are! Ryan Brown |
| We are trying to get Angie on the Home Makeover show but the application process
is very hard and lengthy. We are doing our best. ANGIE ASHWORTH When the residents at The Colonnades, where Angie Ashworth's step-father Joe works, heard about the family's financial problems, they came to the rescue. The most contributions to the family came from the condominium community, said the family's caseworker at People First Inc., Ardella Alberts. "They came through with flying colors. I was shocked," said Angie's mom Debbie. Even though the family is still waiting for work to be done on Angie's bathroom, Debbie is in the process of filling out the application for ABC's "Extreme Makeover: Home Edition" at the urging of the members of a lymphedema support group and other residents, who all plan to send in letters of recommendation with hopes the television show will pick the family for the show. "I've put everybody in my prayers every day for pitching in and helping. She's doing pretty good now, it's been a tremendous help and taken a load off our shoulders because we know we can at least get some of the things she needs," Debbie said. Residence: White City. Nominating agency: People First Inc., Port St. Lucie. Wishbook wishes: Institutional bathing system with whirlpool (estimating cost $7,000 for bathing system and $1,000 for installation charges); a large washer and dryer (estimated cost about $600 for washer and dryer); reimbursement of the medical cost on their credit cards to help them get out of debt (estimated debt $81,607); a pool heater (estimated cost $35.95 plus needs electrician to install); used van with a lift (estimated cost $20,000-$44,000); renovations to apartment including changing sliding glass doors to a regular door; Hague Water Conditioning system (estimated cost $3,800-$4,400); apartment size stove (estimated cost about $300); clothes in size 4X; soft, comfortable house slippers in extra large; medical supplies for wet to dry wound care (estimated yearly cost $59,092.) Donations received: $7,180 in cash and checks, used stove, clothes in size 4X, a Christmas "basket" from a local church with boxes of food, house slippers and a teddy bear, several local electricians and plumbers donated their time to the family. |
| ANGIE ASHWORTH |
| MEDIA RESPONSE
RESPONSE FROM MONASH MAYOR TOM MORRISSEY RE: PERSONAL CARE FOR MS AMANDA BELL Monash City Council has not withdrawn personal care services for Ms Amanda Bell. The client has declined Home and Community Care service after Council made reasonable requests for the isolation of her cats during thirty minutes of personal care. Council provides Home and Community Care to over 3,000 clients in the municipality. Carers follow standard industry practices as outlined in the Victorian Home Care Industry Occupational Health and Safety Guide. In order to minimise the potential hazards to carers and clients, the Guide details risk control strategies, one of which is the isolation or containment of pets during the provision of services. Council uses the Guide in making individual client decisions on a case-by-case basis. In the case of Ms Bell, Council has offered to provide care in the front room of her home. This would not necessitate restrictions on her cats in the rest of her home and at the same time excludes potential risks posed by her pets. Ms Bell does not consider this is a satisfactory solution and has not accepted this offer. |
| WHAT BROWN SENT ME BUT HE NEVER REPLIED TO MY DIRECT QUESTION OF WHY ALL OF A SUDDEN THIS WAS AN ISSUE AND WHO WAS NEGLIGENT 2 YEARS AGO IN ENFORCING THIS. |
| http://www.wstm.com/Global/story.asp?S=1230155
****note this was the url of the article that we got removed yay! 3 addresses to write to: news@wstm.com, partner@thcn.com, comments@thcn.com **these are not linked because we have no need to write them now** Lymphedema BAD ARTICLE Definition Lymphedema is painless edema (swelling) of one or both legs due to impairment in the flow of lymph from the leg. It can be a primary or secondary disorder characterized by the accumulation of lymph in soft tissues, caused by inflammation, obstruction, or removal of lymph channels. Description Lymphedema may be primary or secondary. The primary type can be present from birth (congenital lymphedema) or may occur during puberty mostly in women(lymphedema praecox), or less frequently later in life (lymphedema tarda). Primary lymphedema occurs less often in men. The patient complains of swelling of the foot, leg, or entire extremity. On examination, the edema is diffuse, causes a typical mound on the dorsum (back part) of the foot or hand, and is only partially pitting (compressible). There are usually no skin changes or evidence of venous insufficiency. Secondary lymphedema is often a result of infection. The onset is explosive, with chills, high fever, toxicity, and a red, hot, swollen leg. Lymphangitic streaks may be seen in the skin, and lymph nodes in the groin are usually enlarged and tender. These features may distinguish it from acute thrombophlebitis (venous inflammation). Secondary lymphedema in older persons may be due to malignant disease in the pelvis or groin. Obliteration of lymphatic tissue by excision or radiation therapy is another cause. When lymphedema is due to infection, the response to antistreptococcal antibiotics is rapid. Causes Lymphedema is aggravated by prolonged standing, pregnancy, obesity, warm weather, and the menstrual period. Symptoms Lymphedema of the lower extremities begins with mild swelling of the foot and gradually extends to the entire limb. The edema is usually painless and initially may be pitting (compressible). Over time the edema becomes brawny and non-pitting. There is no evidence of ulceration or varicose veins. Diagnosis The diagnosis is often made clinically. Lymphangiography and radioactive isotope studies may be useful in defining the specific lymphatic defect. Treatment NO CDT!!! Swelling is treated by elevation or pneumatic compression, and then application of a firm elastic support to be worn while the patient is up. The foot of the bed can be elevated 15 to 20 degrees by placing pillows beneath the mattress. Occasionally, diuretics ("water pills") are helpful. Foot and skin hygiene is necessary to prevent lymphangitis and drying of the skin. Treatment of other symptoms and signs is symptomatic and supportive. Constricting clothing and salty or spicy foods that increase thirst are contraindicated. Surgery may be performed to remove hypertrophied lymph channels and disfiguring tissue as well as to reconnect lymph channels (anastomosis). Questions What is the cause? What type of treatment will you be recommending? How successful is the treatment? Will you be prescribing any medication? What are the side effects? Will this recur? Is surgery helpful? ---------------------------------------------------------------- OMG why do they write such false crap....ok I know it is because they get the wrong information from Doctor's. GRRRRRRRRRRRRRRRRR I will write to them but it will have to be after I calm down some. Reading this was like talking to the last dr I went to and ended up having a nervous breakdown and being stuck on suicide watch. I am feeling better emotionally now after being on Cymbalta for 2 weeks but to read this crap makes me sick. What is it going to take to get the doctors and nurses and oh hell every one to understand that we are not this way because we ate to much or what ever??? And that it can be and is VERY PAINFUL?? I didnt ask for this and none of you out there asked for it either but we live with it daily and yet we are not being heard. I even took in information about LE to the dr I seen and he ignored it and told me I was not near as bad off as my friend that has LE in both legs and recommended this guy to me. Lose weight, lower calorie intake....to what 0?? I eat 300 to 500 calories a day if that. hello?? Ok sorry Im ranting but damn Im mad right now!!!! and in pain and not crazy!!!! Hope everyone had a good 4th!!!!! Missy ------------------------------------------------------------- hi missy i feel your anger and i dont think your crazy at all for feeling that way i to was very pisssed at the article its pretty bad when a news team dont do the research before they put a article up for millions of people to read .hope you had a good 4th of july as well Julie _________________________________________________________________ Hi Some doc;s get news like this.. abot what they think is the right way to treat something but there wrong.. so far i have not found a doc who knows alot about this.. as the saying goes cant teach a old dog new tricks.. my feeling is some of them juist dont wanna learn.. been thinking of taking a pic of my leg and posting it on my blog and telling about it on there.. what do you think? then maybe putting something like thoes wrong articles and them some very helping sites for what we have.. i have tommorow off so just may do this hugs victoria ------------------------------------------------------------------------------------ you are so right someone really needs to do there homework and to suggest that water pills help with the swelling and gee whiz whats this chronic pain I have 24/7/365 I do not wish this condition on anyone except an idiot who would evan suggest there is no pain with le I realize it is just ignorance but they need to do there homework before publishing such crap David ______________________________________________________________________________ I am writing to tell you my story and show you pictures and there are others out there with this that will tell you the same thing. There are a lot of sites out there started by people who deal with Lymphedema and have a lot of information. one such site is www.lymphland@yahoogroups.com I highlighted a few things in this article and wrote a few things in there....please read it!!! In 1997 I had knee surgery done on my left knee, and again in 1998 same knee. The knee never worked the same again. In May of 2000 I noticed major swelling in the top of my left foot and ankle. I went to the doctor and they didnt know what was going on and sent me to another doctor. Well we will skip all of the doctors (12) I have been to that told me they didnt know what was wrong, that I would "just have to live with it" and that I would probally have the swelling the rest of my life. I was sent to see a cardio vascular surgeon in 2004 and he told me I had Lymphedema. Wow I had a name, now what? I started doing a lot of research on the computer for answers. I went back to the doctor I had been seeing and she told me that I "couldnt have Lymphedema because I had not had a breast removed" What?? I hear the same things over and over again, lose weight and you will be better. How do you lose weight when you eat less that 400 calories a day because you can not afford to buy food?? Exercise: How do you excersice when you cant even walk 20 feet without being in so much pain you just want to cry?? Get your depression under control: What?? Is it all in my head and Im just crazy? I am currently under suicide watch because of all of these things that are going on in my life. NO MONEY, CAN NOT WORK AND IN PAIN ALL THE TIME!! Depression is also another major side affect to having lymphedema, why? Because doctors will not listen to us. How can a doctor say this does not hurt when they do no live in our bodies?? My left leg is very swollen and hurts 24/7/365. The lymphedema has gone to the right leg with in the last few yrs and it is starting in both arms now. I am in pain every day, some days are better than others. Some days it is all I can do to even crawl out of bed to get something to eat, drink or go to the bathroom. I lost my job in September 2006 because I could not work the 15 hrs a week I was scheduled for. my feet are like ice all the time I have Fibrosis in my left leg and foot and it hurts to even walk from my bed to the living room, kitchen or bathroom. Each day is so different, but I still enjoy the good days, the bad days I dont want to do this anymore, but I know this will be with me for the rest of my life. Melissa _____________________________________________________________________________ I really hope you gave them hell Tina...how dare these reporters do a half assed article and get it published?? This is soooooooooooooo wrong.....the person who wrote this article should be made to make a retraction...both in writing and on the air. It makes me so mad that people think we are just a bunch of people who cant stand any swelling, well, if they could stand in any of our shoes for even a few hours...they would be changing their toon real fast..... Tina, I would love to see your reply to them and then the reply you get back. Thanks Tina for being such a great person, advocate and friend. the more people WE can educate the better!! hugs Annie _______________________________________________________________________________ Re: Health information on web page http://www.wstm.com/Global/story.asp?S=1230155 *not linked as article is gone I found the above webpage, which is the information in your health encyclopedia on "lymphedema". I strongly advise you to find someone who knows something about this condition who can rewrite this terribly outdated information. If this is the level of accuracy of other material in your encyclopedia, then it should be taken off the web. Not all of lymphedema is of the lower limbs--at least one third involves the upper limbs, upper torso and breast. [Szuba] The recommended standard treatment of lymphedema is NOT pneumatic pumps, elevation and elastic garments. The standard of lymphedema care as defined by KNOWLEDGEABLE medical organizations (e.g. American Cancer Society, International Society for Lymphology, National Lymphedema Network, National Cancer Institute, etc.) is Complex Decongestive Therapy (CDT). It involves manual lymph drainage to reduce swelling, compression therapy using short-stretch (NON-elastic) bandage systems and flat-knit garments to maintain the reduction, special exercises while under compression to maintain the reduction, and meticulous skin care. Diuretics are contra-indicated for treatment of lymphedema, and surgery has not been found to be useful in the long-term treatment of lymphedema except in special circumstances. [ACS, NLN, ISL, NCI] Lymphedema is NOT painless. A large percentage of peripheral neuropathy in cancer survivors is thought to be caused by nerve entrapment by the swollen lymphedematous tissue. [Engel] Where do you get the impression that there are no skin changes in primary lymphedema? There are skin changes that are part of the definition of lymphedema that start within months of untreated swelling. Phase 3 of lymphedema is defined predominently by skin changes. "When lymphedema is due to infection, the response to antistreptococcal antibiotics is rapid" but the inflammatory process set in motion by the infection persists for months, and when the antibiotics are ended in one week, the infection will usually recurr in a few weeks. Antibiotic treatment of lymphedema-related cellulitis in Europe, where physicians are educated on the lymphatic system and its diseases, is far more extensive than in the U.S. [Olszewski] Lymphangiography is seldom used for diagnosis of lymphedema today because of its destructive effects on the lymphatic system. Lymphoscintigraphy has replaced it as the diagnostic tool of choice. [NCI] I could go on, but you shouldn't take the word of a layman--go find an expert to rewrite your inaccurate article before more interested readers are mislead. Robert Weiss, M.S. Lymphedema Treatment Advocate National Lymphedema Network ----------------------------------------------------------------------------------------- I sent my $.02 worth to them. Well just one of the addresses that was posted anyway. I may as well send it to the other two also. They are gonna see that this Fat Boy ain't too happy about their article. Jerry _____________________________________________________________________________________ would you believe Tina , i was looking for a special mattress (one that i had seen in a news report about a women who had Lymphedema and she was being given this mattress to increase her circulation ) i typed in lymphedema mattress and i hit that link , i too was shocked and very angry . why can't people use logic to figure out , when your body sits in toxic lymphatic fluid damage is sure to be done . the pressure alone of all this fluid on the muscles , nerves ,and bones HURTS and the skin hurts from being stretched all the time . grrrrrrrrrrrrrrrrrrrrr Oh by the way today i did find the mattress i was looking for .LOL Hugs Mac ______________________________________________________________________________________ Lymphedema Article in your Health Encyclopedia The article has been removed. It is no longer available on their website. Paul. ___________________________________________________________________________ Re: Hurray!!!!!!!!!!!! Article removed Yes, WAY TO GO FAMILY!!!!! That saying is true, there is strength in numbers.....who's next?? Annie _________________________________________________________________________ I couldnt believe it so had to go look! I am so GLAD they removed that pack of lies, now maybe they will look into it more and write something so much better.. pat pat pat (on the back)!!!!!! We will get the correct info out there!!! Now if we just get dr's to listen. Missy __________________________________________________________________________ Re: Hurray!!!!!!!!!!!! Article removed YAY!! See how we can make a difference ! Tina |
| MAJOR ACCOMPLISHMENT GETTING A BAD ARTICLE ON LYMPHEDEMA REMOVED!!! |
 |
| A young man 6 feet 4 inches tall is almost 500 pounds above his ideal weight. Llewelyn Meighan, affectionately known as “Big Lue,” is not just obese, but also he suffers a complication known as lymphedema – a fluid build-up in both his legs, which are so large, it makes it impossible for him to walk more than a half a block.
“It took a toll because it was growing, and affecting my walking—affecting me in many ways that I cannot perform like a regular person would do. It was more than frustrating,” Big Lue told Amandala. “There were times when it seemed the wall was coming down on me – hopelessness, like you don’t know where to look or who to ask. It was really stressful at times.” Llewelyn Meighan, a friendly, upbeat, and optimistic Belizean man, is only 29 years old, but he feels that if he does not get urgent help, his leash on life will very quickly run out, killing his dreams of living a normal life once again and perhaps even having a family someday. Based on his research, his best bet is to undergo two surgeries costing BZ$65,000 in Guatemala. “I’d like Belizeans to know, and especially young people, it is not just gaining weight I’m gaining weight. It is a problem. ‘Cause people would ask, ‘How did he get to this point?’ It is not by greed. It is a problem,” Big Lue said. The public reaction to his size has been disappointing: “If I would pay a light bill or water bill, the moment you step in the business everyone would stare at you until you’re out of sight, and it’s not a nice feeling. You know one time I really had to wait so I took a seat beside someone…the person got up and went somewhere else,” Big Lue shared. In speaking with Amandala this morning, he told us that up until 7 years ago he lived quite a normal life, but then he notice that he started to have abnormal weight gain. “It seemed that no matter how I diet, I wasn’t losing weight so I knew there was a problem. Also I was watching what I was eating. I eat small portions but I still was gaining weight. I wasn’t overweight most of my life,” he shared. Lue is a graduate of Gwen Lizarraga High School and Belize Technical College, where he studied engineering. For about five years, he did side jobs for KREM’s management, and he has also worked as a bus driver for Novelo Bus Line and David Gegg’s Transportation Services of Belize, as a tourist driver. But towards the end of 2006, Big Lue quit. He describes himself as an invalid, and he stopped working, he said, because his weight and the growth on his legs made it impossible for him to properly operate the standard transmission buses that the bus companies used for transportation. But the biggest frustration came, he said, when he tried to find out what was wrong with him but did not get the answers he needed at the time. He has attended public clinics at Port Loyola and Cleopatra White. “I was told that it was nothing serious, because it was just fat getting into that area due to driving…that was the area that was easy for the fat to store,” he said. In its early stages the growth was the size of a grapefruit. Today, is has spread to his entire leg, and is even larger than a watermelon. Big Lue said that he tried dieting and exercising, but the growth continued. “I tried to seek help from other doctors and unfortunately there is no specialist in Belize…So I was stuck, and I had to seek help outside. I visited a doctor in Chetumal [Mexico]. He told me what was basically wrong with me and he was showing me – because they have cases of it there – he told me it was known as lymphedema growth – fat and tissue,” he recollected. According to Meighan, the Mexican doctor told him that there are two possible procedures: liposuction or surgical removal. “Luckily, programs started to air on TLC, with the same problem that I have, in America, and it was starting to air frequently, [so I know] that not only [are there] people in my Third World country Belize…[with] this problem, that they are suffering from that over that side and it was so frequent that they had to do a documentary… and that’s how I came to fully know what was going on,” he explained. Big Lue said that the best response and estimate to reverse his condition has come from Guatemala City, and they are ready to do the procedure to remove the growth, as well as gastric bypass to help him lose weight, as soon as he is financially ready. Big Lue said that it has not been easy for him trying to address his obesity issues. “It was frustrating because I was searching for answers to my problem and no one in Belize was familiar with the case…I have to seek help outside and I didn’t have a lot of means of getting out there because I was making a very minimum wage salary and I can’t do a lot with that,” he expressed. He finds strength in prayers as well as the support of friends and family who give him encouragement to struggle on. Big Lue says he misses being able to help himself. “At this point I am dependent on my family and friends, and it’s not a nice feeling to be dependent, because all my life I’ve been dedicated to work. I’ve been a hard working young man I’ve never been without a job…and not being able to provide for myself is very stressful and depressing to me,” he lamented. Big Lue said that he has come to the media with his story because some have made promises and nothing has materialized. Since his story first came to light last week, there have been a handful of responses. We understand that the Social Security Board is also looking into providing some assistance to Big Lue. Public Relations Manager Rojhani Toombs told us that the SSB is committed to helping, and are assessing his case, with the view of offering assistance for surgery in Guatemala, since they have confirmed that the surgeries he requires to address his weight loss and lymphedema cannot be done in Belize. Big Lue’s case is urgent. Anyone wishing to contribute to helping Big Lue can submit their contributions to Holy Redeemer Credit Union, account # 47675. Call him at phone 605-6615, or visit him at #18 Castle Street. “This can happen to anyone, to any one of your family members or friends. So I am appealing to the public to assist me financially with anything that they can. Nothing is too small and nothing is too big,” Llewelyn said. “I may not be able to return the favor but God will someday.” Karen Rosito, a registered dietician, told us that she first met Llewelyn about 4 years ago. He started on her program but did not finish, and she believes it was because he could not afford to continue. At the time he had 410 pounds, but he has since ballooned to over 700 pounds. She said that Big Lue would need to undergo a weight loss program to reduce by at least 100 pounds before he undertakes any surgery. That alone would require sponsorship of $1,000 a month for him to get the right eating program, exercise, counseling, medical monitoring. Rosito said that there is an alternate procedure that can be done locally to help Big Lue lose weight. Belize Defence Force doctor, Dr. Irvin Gabourel, a gastro-enterologist who also works out of Universal Health Services, explained that a rubber balloon could be inserted in his stomach and inflated with approximately a liter of fluid. This would slash his food intake by reducing the space available in his stomach—decreased by the space occupied by the balloon. Llewelyn could take liquid diets and see weight loss results of anywhere from 60 to 200 pounds, depending on his own level of discipline. The procedure, along with an 8-month medical and nutritional treatment, costs in the region of $20,000, and does not require irreversible alterations of his stomach, as the gastric bypass procedure would. Dr. Gabourel said that he is introducing this procedure for the first time in Belize on a 300-pound patient. When we advised Big Lue today of this new development, he told us that he is open to anything that he knows for a fact is best for him, and that he will follow up with Dr. Gabourel to find out more information. He explains that he had decided on the Guatemalan facility because he knows of Belizeans who have experienced success with their procedure, but adds that if the procedure here is “good enough or safe enough,” he won’t hesitate. http://www.amandala.com.bz/index.php?id=6603 info@amandala.com.bz <info@amandala.com.bz> |
| ***I wrote the editor at the above article about the dangers of surgery on stagnant lymph fluid but received no response. That's all we can do is hope good information reaches Lou and he comes out ok from this. |
| Reality’s Believe It or Not
Physically unusual people have 'performed' for decades. But on TV, they're bigger—and smaller—than ever. Is this entertainment, or exploitation? By Susanna Schrobsdorff | NEWSWEEK Mar 3, 2008 Issue | Updated: 1:00 p.m. ET Feb 23, 2008 « Return to Article Related:Matt Roloff Debbie Myers Rosemarie Siggins Discuss Comments: Enter Your Comment Posted By: ermnews @ 02/24/2008 10:07:54 PM Comment: I am not sure about the exploitation claimed in this article. The actors consent to the filming of there stories. In fact the program on dwarfisim has run for at least 3 or 4 years. However it is disconcerting that the claim that the actors are not paid but I doubt that the actors in fact need to be paid. Most seem to be well off. The lady with the lymph node disorder seemed to be helped in finding doctors although it was odd that she had to use public phones to call them. The issue that the actors do not control what the narrator says is perhaps the most valid critiscism in this article. In any case, I do believe that the millions made on these shows is not fairly distributed to the participants but that has been the case with entertainment business for forever minus movie acting once the actor has reached the big time. Perhaps there should be a reality tv actors union which would then have to have a show about itself and its own awards show. I think the attention of the writer of this article and that of newsweek is better focused elsewhere rather then on the cliche of reality tv and whether it is reality and exploitation or not. How about changing education so that it is effective with different races and economic situations? Effects of TV and Interent on current generations knowledge of the outdoors and its future environmental effects? Posted By: Silentmajority @ 02/24/2008 9:52:14 PM Comment: How Politically Correct NEWSWEEK is! What's wrong with freak shows, after all? They make money! Posted By: GreatDane @ 02/24/2008 5:36:04 PM Comment: Of course it's exploitation~~on your part as well, if you watch them. I choose not to watch this stuff. The fact that something is broadcast is not the same as "it must be part of my thoughts and my day or I will not be able to go on"....Exploitation such as this requires marketing, contracts, advertisers, audience, a whole lot of staff, etc. etc. So if you're watching it and providing the bottom line, please don't act like it bothers you. You're the reason it succeeds. Posted By: herbiemax @ 02/23/2008 8:48:45 PM Comment: I do find the show Little people inspirational, they "as they say" can do anything anyone else can just in a different way, and they prove it with each show. Cuddo's to them. You didn't mention John and Kate husband and wife with twins and sextuplets, Both good shows. I suppose that shows in which people manipulate others to win the big prize are the good ones? And anyone who slants the news the way that you do has no right to talk badly about any tv program. Posted By: tinabudde @ 02/23/2008 8:19:28 PM Comment: It is very sad that people have to feel that desperate to go on tv to start with in order to educate people and/or get the help that they need but if that'st he only way we can educate people then that's what we have to do. You do what you have to do to get what you need. Posted By: tinabudde @ 02/23/2008 8:12:53 PM Comment: There's a fine line between reality and entertainment, I would prefer to call it sensationalism but if it gets a condition noticed then that's what we have to do. I watched My Big Foot. I have lymphedema. I am the owner of Lymphland International Lymphedema Online support group and the New York State Lymphedema Network. For years we have been misdiagnosed, ignored, blown off, told there was nothing we can do for you, and basically were left alone to deal with our health issues. We've been called "fat" when we carry several hundred pounds of fluid. Try to live with this and feel good about yourself? It takes advocates like us and shows to publish lymphedema information to initiate change. It doesn't matter how it's done only that it is done. If someone thinkgs it's amusing, they are a strange person. Mostly, it's shocking situations where people learn what a true health issue is. I would like to applaud the Big Foot Lady, she had guts to go on the show and show her foot to all of us, to make us aware of how she lives, and she is getting help now for it. That's the goal, to educate and help others. That's what my network and support group does and we invite anyone with lymphedema to join us. Sincerely, Tina Budde, New York State Lymphedema Network, Lymphland Website and Lymphland International Lymphedema Online |
| The information below was in regard to TLC's show called "My giant foot" aka "My Big Foot". The lady has lymphedema and went on the show for help. Is that really sensationalism? OR does that tell people we really need healthcare reform if people have to lower their esteem to plead for help on tv? |
| MISSISSIPPI BILL WILL MAKE IT ILLEGAL TO SERVE THE OBESE http://www.rumormillnews.com/cgi-bin/forum.cgi?read=118076
Posted By: Susoni <Send E-Mail> Date: Saturday, 2 February 2008, 5:14 p.m. You've got to be kidding me here. What are they going to do, weigh the people at the door? This is.. is... just the most absurd thing that I've heard in a long time. I'm extremely offended and I'm not even overweight!! I wonder how many overweight politicians wrote this bill?? Shouldn't they be taking 'growth hormones' out of the meat and making it illegal to use Aspartame or other growth causing chems?? Set to take effect (if passed) on July 1st, 2008 Susoni Mississippi Pols Seek To Ban Fats New bill would make it illegal for restaurants to serve the obese FEBRUARY 1--Mississippi legislators this week introduced a bill that would make it illegal for state-licensed restaurants to serve obese patrons. Bill No. 282, a copy of which you'll find below, is the brainchild of three members of the state's House of Representatives, Republicans W. T. Mayhall, Jr. and John Read, and Democrat Bobby Shows. The bill, which is likely dead on arrival, proposes that the state's Department of Health establish weight criteria after consultation with Mississippi's Council on Obesity. It does not detail what penalties an eatery would face if its grub was served to someone with an excessive body mass index. http://www.rumormillnews.com/cgi-bin/forum.cgi?read=118477 LYMPHEDEMA MAGAZINE EDITOR RESPONDS Posted By: Susoni <Send E-Mail> Date: Thursday, 7 February 2008, 11:01 p.m. In Response To: READERS RESPONSE .. (Susoni) Hi Tina, You go Girl :-) Susoni *************************************************************** This is the most ridiculously showing of prejudice I have ever seen! So they can't "not serve" blacks anymore it's time to pick on another type of person? I think the lawsuit you and the restaurant serving would face for not serving a "large" person would far outweight the penalty of the server. Obviously these 3 men are pretty ignorant and never should have been elected in the first place. I would hate to be in their shoes when a patient such as myself sues them. I suffer from lymphedema and carry around fluid, fluid that makes me weigh alot in the abdomen among other body parts. I look pregnant which brings up another topic, are you gonna ask who is pregnant and who is not? What a crock of BS and a violation of rights. Bring your little prejudice game on and maybe we'll have a lymphedema convention down with the good ole southern illiterate 'boys' and when you refuse to serve us for being "fat" well then you will be paying for our dinners for the rest of your lives. Sincerely, Tina Budde ELymphNotes Lymphedema Magazine Content Editor President of Lymphland.com website and Lymphland International Lymphedema Online (LILO). National Lymphedema Network Ask The Expert Lymphedema Panelist American Society of Lymphology Cancer Survivor, Patient Advocate, and Patient with Lymphedema |
| Dear Editor:
I find it ridiculous that you have an email us button on your website if you do not intend to acknowledge letters, publish reader letters, or even bother to respond. This is my 2nd attempt to write you concerning Big Lou and the story you published on him. His health is at stake here and why publish the article if you do not bother to care about his health in the first place. Is it because you just want high ratings for sensationalism because he's BIG? I wrote you before concerning his lymphedema health issues. The man should not be considering any surgery at all until he has gotton his lymphedema treated. Complete Decontestive Therapy is the treatment of choice, a gold standard treatment, recommended by the National Lymphedema Network. I am a member of the network and I find it very sad that nobody even bothered to look into treatment options for this gentleman. By getting his lymphedema more under control, it would enable him to possibly start an exercise program and along with a sensible diet, he may not even need the bypass surgery. The procedure of surgery should be only used as a last option and the surgery itself will NOT take the fluid out of his legs. He is at risk for cellulitis (infection caused by staph or strep) at this point and the surgery makes it a greater risk. Although I know you probably won't acknowledge this letter or even send it along to him, I feel it's my duty to try get a message to him. I am asking members of the lymphedema communities to write you as well in the hopes one of us get the message through. Sincerely, Tina Budde Lymphland International Lymphedema Online (LILO) National Lymphedema Network Member American Society of Lymphology Member Content Editor for ELymphNotes Lymphedema Magazine |
| MY 2ND LETTER |
| These letters are in regard to an article about girl scout cookies being harrassed about their cookies helping to make people fat. Because we retain fluid and have been told to "lose weight", because we have lipedema issues which is not weight you can lose, we take offense to being called obese or fat. People don't understand or know about lymphedema. Our responses: |
| I find it amazing that we now blame Girl Scouts for our obesity in this country... I think if people would look more closely at what is really going on they would find that ait has more to do with medical conditions such as Lymphedema or Thyroid and other problems. but if you want to go the route of blaming cookies then you must first blame the people eating them... There is something to be said for moderation... and if a person does not have moderation then that is what is causing food obesity.. a cookie or two never hurt anyone... It is the person who eats the whole box not the one or two... But if you look at people with medical conditions it is always the same.. they must eat like pigs???? why is that???? We never see anything on the medical causes of obesity.. I would love to see something on Lymphedema a very closely hidden problem in many Countries that can even effect animals.... but when you see a person walking that looks big compared to the so called thined out models then of course in most peoples minds it must be because they over eat.. Please do a story on LYMPHEDEMA show the world that all obesity is not from Girl Scout Cookies.... And lets change the way people like at obesity the right way..... We spend more money trying to avoid the facts.. medical help in the early stages prevent more costly medical treatment in the long run.. don't blame the patient until we know the facts.. is it or is it not over eating???? Is it Medically induced... ? stop blaming Cookies...... until you know for sure.............. you will find..there is a fair % of obesity that is medically related.. Stop treating all obesity like it is cookie related..
Please consider letting people know how much it costs for the public to care for disabled people after the fact.. get medical help now so that the person remains healthy enough to care for themselves and able to continue working.. and stop blaming the person... and cookies... Marbeth :) Dear Mr. Cavuto: One of the members of my support group pointed the article out to the entire group. We are a support group called Lymphland International Lymphedema Online (LILO) and we have about 450 members and are growing every single day by a few more people who find us and join our group. I need to comment about the story. First off, what is the big deal about the cookies? I honestly don't see one if the cookies are truly trans fat free. What I find is a big deal is the lack of information in most news media resources and guest on the show to the fact that obesity is NOT always so called "obesity". Some of us have medical conditions that make us appear to be obese when in fact we are not. And, also some of our health issues cause fat and weight gain as well. I thought this would be a good time to write you and spread awareness. March 6th is designated Lymphedema Day in many states. My support group is made up of lymphedema, lipedema, and lipolymphedema patients. Lymphedema is a condition in which the lymphatic system in the body is not functioning properly and it causes patients to retain fluid in the body. It is a painful and it is a progressive condition, it is a condition that is linked to many more conditions such as hypothyroidism, hypertension, fibromyalgia, etc. We are people that are misdiagnosed as being "fat" and are told to lose weight by doctors, who many are medically ignorant of the condition and the problems we face. We have to educate them. Lipedema is a tissue disorder which involves the excess deposit and expansion of fat cells usually from the waist to a distinct line just above the ankles and unlike the “normal” fat of obesity, lipedemic fat cannot be lost through diet and exercise. I'm going to give you the link to my website, http://www.lymphland.com it is also on the bottom of my email as are my affiliations and organizations. It has taken years and years of hard work by patient advocates, parent advocates and finally lymphedema foundations to even accomplish getting research, some lymphedema bills passed, and some insurance coverage. I find it very disgusting that people are so very quick to judge and jump on the obesity bandwagon without regard to the people who have health issues such as lymphedema and lipedema. Untreated lymphedema can progress to the point of hundreds of pounds of tissue and fluid accumulation. If doctors are so quick to say lose weight, how can this person ever get the help they need? And this obesity epidemic, is it really ALL fat people or is it because of the environmental factors damaging lymph nodes causing fluid build up in others as well, others that don't even know it? I'm not saying that everyone has lymphedema or lipedema, I am saying that we need to be more compassionate and understanding and learn before we jump all over a person for weight issues. Without lymphedema, before lymphedema, I weighed 110 pounds. With lymphedema I weigh 170, and I'm still gaining fluid as it's very hard work to constantly work on your body doing massage-like bodywork called Combined Decongestive Therapy to keep the fluid moving. It's such a depressing and time consuming process, and coupled with the other health issues that come with it, many of us are on disability and struggling to survive. One infection for us (cellulitis) can be deadly. We all know that antibiotics don't do the job as they once did from overuse. And, if you really want to get picky, let's take all the people out there on public assistance and not working, and those with minimum wage jobs. They are the people who might be obese, they cannot afford to eat properly and buy fresh foods. They rely on cheap fast stuff like McDonald's just to survive. Couple that even with people like us on disability, well then you have heavier people who get obese from not eating properly. Can any of you honestly live on what disabled people make? I don't think so, and add in that our Combined Decongestive Therapy is NOT always covered NOR our compression garments we must wear to try to maintain..... and you got the mixing for problems. So help us, get this word out there to the media, publish my email here and if you'd like I even have a slide show you can use on the air. Contact me and I will send it to you. Even if everyone else doesn't so their part, I know I did mine in writing to you, and you can do yours too by sharing what lymphedema is to your viewers and readers. Thank you! Sincerely, Tina Budde Tina New York State Lymphedema Network Owner Lymphland.com Owner Lymphland International Lymphedema Online (LILO) Owner ELymphNotes Lymphedema Magazine Content Editor National Lymphedema Network Member American Society of Lymphology Member Ask-the-expert Panelist LymphDG moderator Patient Advocate Phone & Fax: 1-206-338-5495 |
| here's another one. See how many you can find, finding a site with bad information will be worth 10 entries into the prize bucket (remember time is running out, 3 more days to the draw....)
For this site, if you write a letter to them complaining about the wrong info and post it, it's worth another 10 entries! http://nbcam.org/disease_therapies.cfm nbcamquestions@yahoo.com <nbcamquestions@yahoo.com> contact info. Lymphedema is a swelling condition caused by the collection of lymphatic fluid in the hands, arms, or chest. Lymphedema may be caused by lymph node dissection, surgery, or radiation therapy for breast cancer, which can damage or disrupt the normal flow of lymphatic fluid through the body. Women who have not had a lymph node dissection cannot develop lymphedema, and most women who undergo breast surgery and radiation therapy do not develop the condition. There are a variety of options for treating lymphedema. Dear Sir or Madam: I am writing to you to address some misleading information on your website. Basically I have found the site to be a good resource but I am concerned at the lymphedema paragraph: Lymphedema is a swelling condition caused by the collection of lymphatic fluid in the hands, arms, or chest. Lymphedema may be caused by lymph node dissection, surgery, or radiation therapy for breast cancer, which can damage or disrupt the normal flow of lymphatic fluid through the body. Women who have not had a lymph node dissection cannot develop lymphedema, and most women who undergo breast surgery and radiation therapy do not develop the condition. There are a variety of options for treating lymphedema. You need to re-write the paragraph. First off, Lymphedema can occur anywhere in the body, it is not just confined to the hands, arm, or chest. I realize you are writing this from the breast cancer perspective but it is misleading and if you intend to just write about breast cancer lymphedema only, then you need to specify it. Also, there are more causes of lymphedema besides the ones you mention. Lymphedema can be caused from malformations, accidents, trauma, bug bites, ect. Any injury can trigger it if you are genetically prone or even a breast cancer survivor who did not develop it right away. And the paragraph that concerns me the most is "Women who have not had a lymph node dissection cannot develop lymphedema and most women who undergo breast cancer surgery and radiation do not develop the condition." This statement is 100% false. Women can be born with lymphedema which is called primary lymphedema, it can come later in life, it can be triggered after trauma or an accident, there are so many other causes. Even if you don't have an axillary node dissection, you can still develop lymphedema! You need to seriously re-write this section of the website. Lymphedema advocates, patients, therapists, and organizations have worked too hard fighting for patients rights and against medically ignorant doctors, not to mention the public and the obesity epidemic (patients are often misdiagnosed and called "fat" and told to lose weight) to allow this kind of false information to be out there to hurt us! If you need help changing the information on your site, please let me know. You can always use information from my website, Lymphland.com to help you re-write the text. Sincerely, Tina Budde Tina New York State Lymphedema Network Owner Lymphland.com Owner Lymphland International Lymphedema Online (LILO) Owner ELymphNotes Lymphedema Magazine Content Editor National Lymphedema Network Member American Society of Lymphology Member Ask-the-expert Panelist LymphDG moderator Patient Advocate Phone & Fax: 1-206-338-5495 My letter... hope it helps... :) Hi... I am writing to inform you of some misinformation posted on your web site regarding Lymphedema....You stated that "Women who have not had a lymph node dissection cannot develop lymphedema, and most women who undergo breast surgery and radiation therapy do not develop the condition." I urge you to research this position and update your site. You can do so by going to www.lymphland.com to find a great source of information. I have never had a lymph node dissection and I DO have lymphedema.. I have what is called Primary Lymphedema caused by a genetic disorder of my lymph system.. and you can also get it by having an accident or injury to the affected area.... Lymphedema can even affect animals... Please do some research on this serious and life altering condition that could lead to serious problems for you readers who believe that they are not able to have this condition when in reality anyone can have this condition and not even know it..... without prompt attention it can lead to permanent and serious problems and even death as a result of Cellulites... This is something that your readers and all medical persons should be more aware of.. Again please restate your information with the correct information and help protect those affected... Sincerely, Marbeth Hill :) Cynthia Church" <nbcamquestions@yahoo.com> Add Mobile Alert Yahoo! DomainKeys has confirmed that this message was sent by yahoo.com. Learn more Subject: Re: Lymphedema Mis-information on your website To: "Tina of Lymphland Support" <hurt_chik@yahoo.com> Hello, Thank you for your observation, although our information is related to breast cancer and understanding that it can be developed in other areas of the body, we will have it reviewed and corrected by our writers. Please check our location, again soon, for changes/corrections. Thank you for contacting NBCAM.org. Just discovered your generally well-written and informative website "National Breast Cancer Awareness Month" http://www.nbcam.com I searched the site using the search box, and manually, but found not one mention of the sequela of breast cancer treatment which will affect one quarter of the men and women treated for breast cancer--LYMPHEDEMA. Basic treatment involves the excision of the tumor and the irradiation of the breast and, if necessary the axillary basin. Diagnosis often involves dissection of a couple of sentinel nodes and, if necessary, the axillary nodes of levels I and II and sometimes III. ALL of these diagnostic and curative surgical and radiative procedures create a risk of LYMPHEDEMA. I am referring not only of the 20-50% risk of upper limb and upper torso lymphedema created by dissection and radiation of the axillary nodes for systemic metastatic control, but also of the 7-23% risk of breast and chest lymphedema created by sentinel lymph node sampling and tangential radiation for local control. A certain percentage of the population of breast cancer diagnosed patients will have DCIS or early stage node negative IBC. These women must be informed of a trade-off that they should consider involving radiation which may lower their risk local recurrence but raise their risk of lifelong breast lymphedema and cellulitis and contralateral BC VERSUS no radiation with a higher risk of surgically-salvageable ipsilateral recurrence and lower or no risk of breast lymphedema. There should be an acceptable way of presenting the appropriate questions to the Doctor which will allow this choice to be made. The bottom line is that you are failing in your mission to inform breast cancer patients of the issues and their rights by not even mentionning the still common sequela of breast cancer treatment that is LYMPHEDEMA, and the power they may have to choose a treatmet that will not have so devestating an impact on the quality of their remaining life. You also miss the opportunity to inform breast cancer patients that there IS a medically recommended protocol for treating and managing lymphedema, called "complex decongestive therapy" and there are sources of reliable information and assistance for the 25% of them who will develop this condition--the National Lymphedema Network. Hiding the condition in discussions of breast cancer treatment does no-one a service. There is a general bitterness felt by breast cancer survivors who were never warned by their doctors of the probability of developing this condition, or told of the availablilty of treatment for it. You have an opportunity to correct this sad situation. Please contact the undersigned for any further questions on the subject, or for free help in developing a medically sound content for your web page on the subject of lymphedema, its etiology, pathophysiology, and its treatment. Robert Weiss, M.S. Lymphedema Treatment Advocate National Lymphedema Network Graduate NBCC Project LEAD and Quality Care LEAD Graduate NLN Lymph Science Advocacy Program Dear Mr. Cavuto RE: Banning Girl Scout Cookies Where will this End? When will this world stop judging people by there looks? Blaming Girl Scout Cookies for being obese, Come on!! Do you really think that All obese people choose to be obese? Those who are judging the obese, Are They Doctors? Do they know each individual personally? Do you know for a fact these people don't have a disease that has hindered there lymphatic system? Perhaps they should educate themselves on that before they say it's what there eating, or that there not exercising. Perhaps maybe they should do some research on lymphedema, lipedema, and lipolymphedema patients. Lymphedema is a condition in which the lymphatic system in the body is not functioning properly and it causes patients to retain fluid in the body. It is a painful and it is a progressive condition, it is a condition that is linked to many more conditions. There was comment on the show about obesity is why we have Diabetics, that isn't true either, I know many thin people who have diabetes. So my thought Is this is don't judge people by there looks, judge by who they are as an individual no the facts before one classifies everyone wanting to be obese! How About getting some more doctors, therapist, and insurance companies more education on Lymphedema, Lipedema! We need to get the awareness out there that not all people choose to be over weight. There are diseases out there that are being misdiagnosed, there are people out that have been diagnosed, that can't be treated because insurance companies won't cover for the care we need such as Combined Decongestive Therapy to keep the fluid moving. Or the compression garments needed to help maintain so the swelling stays away. Some should do a web search, and start learning. Results 1 - 10 of about 2,360,000 for Lymphedema, plenty of education out there. Or another good site to learn about it is. http://www.lymphland.com/ Please help get the word out there that not all people are obese because they want to be. Thank you for your time Cheryl in Minnesota Proud Parent of A Girl Scout who Sold 349 Boxes of Cookies to Support her Troop! P.S. I'm currently not obese, but was as a kid growing up! Yes even Children can have it. So the people, that blame the parents for feeding there children wrong, I won't go there, that is an entire other rant. hello my name is sue beardsley, i am a 42 year old woman who has NEVER had cancer or any cancer treatments. I am writing to you because your web site has misinformation on it re: Lymphedema..I have primary Lymphedema Praecox,meaning my Lymphedema onset at age 16 during puberty.My LE is in my lower left leg from the knee down. I have lived with this condition and its emotional spiritual and physical effects all this time and its not an easy row to hoe but i will not give up trying to educate people about LE and the different ways it can onset. Women and MEN can get LE even if they have never had cancer.For more Accurate information please contact the group i am involved in at the following e-mail addy Lymphland@yahoogroups.com Sues I have recently been diagnosed with Primary Lymph edema. It is a progressive chronic condition that is not curable. 1 in 10,000 will get this condition that when left untreated can become debilitating and even cause Cellulites that can cause death. I never hear about this condition and it appears that most people who have this do not get proper diagnosis because most doctors do not even understand it. I find that amazing since so many people have this condition. I urge you to please visit my online support group lymphland@yahoogroups.com and consider doing a show on a very misunderstood condition. We notice that you do shows on Obesity. Many people who have Lymph edema are told they are obese when in fact they are not. They have fluid that can give the appearance of obesity and are many times ridiculed because of the misconception that if you look obese it must be your fault… Please consider a Lymph edema awareness show… Thanks, Marbeth :) |
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