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House Bound Patients Can Promote Awareness Too...
Lymphland, The International Online Support Group
My name is Tina Budde and I have Lymphedema (LE), mixed with multiple other medical problems. Given have two choices, remain depressed and let everyone else do something or use my frustration as fuel to make things happen. Because my conditions keep me mainly homebound, what can I do? With the limitations placed upon me, I decided to reach out to others by promoting awareness and advocacy by founding LYMPHLAND. A website and a support group on Yahoo. The official name is Lymphland International Lymphedema Online (LILO) at LYMPHLAND. From there, we have been working on many different projects such as:
The Hallmark Card Project, honoring March 6 as LE Day.
March 6 is designated as Lymphedema Day in many states, but it is October 17th in some others. Lymphland Support Group honors both days, however, our latest project is to design and submit a card to many of the larger websites such as Hallmark.com, to recognize March 6. We decided that if a card marks a Cupcake Day and other smaller days, then a LE Day should be too! At present we are creating the text and graphics to convey our messages. Get a sneak peak and preview our cards and let us know what you think at…
CARDS
Insurance Reimbursement Petitioning
It seems that every family affected with LE continually face roadblocks with obtaining coverage for supplies and care. Patient Alma Smith contacted us for help. To no surprise, they had already denied her coverage for expensive compression stockings; however, they would pay for care if she needed hospitalization or home care. After much publicity, phone calls and letters, the Oregon Medicaid finally agreed to reimburse Ms Smith. It’s not easy, some day I imagine it will be–they’ll become tired of processing the same type of claim over and over. Costing them more money in admin than the reimbursement actually is. Some times we lose. Sometimes we win. However, if people like us do nothing, Medicaid won’t either.
Adding LE Terms and definitions to National Dictionaries
If you look online, finally, there is a hand full of Lymphedema sources and other general public sites mentioning LE. Our goal includes submitting LE words such as “lymphing” to online dictionaries and asking medical websites to rewrite their definitions and information about lymphedema. No one else to my knowledge is taking on this task and I welcome supporting reports and articles from physicians and Scientists for general medical sites to take LE seriously.
Connecting Patients to Local Resources.
New diagnosed patients are often at a lost for where to go. Local resources are few and far between and usually word of mouth is the answer. But how do you get access to the local help? When ask, LymphLand researches the areas where patients live. Support groups are usually the perfect doorway. Lymphatic therapists and interested doctors who are great at what they do are usually too busy to market themselves, but are often talked about and commended at local support meetings. It feels the immediate satisfying to relief the frustration of a patient’s quest for help.
Donation LE Garment and Supplies Center
It is my hope that by October 2008 we will have a center established where people could donate unneeded lymphedema supplies in order to distribute them to those in need. At present we have a few videotapes and books available for loan to patients. If anyone has supplies, needs help or has a question contact me in the forum content of eLymphNotes or at TINA
Forthcoming Projects
Our goal is to contact medical schools to advise them to update and revise their currilums for MDs, RNS and other specialty medical degrees with lymphology education and to include a segment on LE prevention and management. No longer is LE a condition that is untreatable. Medical professionals want to be armed with knowledge or resources to help their patients.
By: Tina Budde,
Founder of Lymphland
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