Getting the word out

[joyous66]

I just wrote to - 3 talk shows (Ophra, Montel and Today Show) about getting the word out for us Lymphedema in USA


Now if other people's can do the same then I think in would help us in many ways


so let go family lets get the word out so we can have a new bill for Lymphedema.

Joyous;)

[ramarch16]

I also wrote to those shows and never got a reply from any....seems like people just do not want to hear about something they know very little about....very frustrating

[Ann]

Please keep trying to get the word out!!!! Maybe if enough of us keep up the pressure someone will pay attention!

Ann

[ramarch16]

I really thought Oprah would, she did such a good job with breast cancer, but I did not even get a reply! i have tried on 2 different occassions, I will try again!

[lymphbabe93]

thats an awesome idea!! i never thought about writing to t.v. shows!! im definately gonna try writing and trying to put the word out there!! im tired of being weird just cuz im different!!! keep on trying!!!!!!!!!!!!!!!!!!!!!!!!!!

[evenwaba2]

Does anyone know if the Lymphatic Research Foundation contacted Oprah? I think they did. I guess we need to keep trying!

[guit30]

Thanks for getting the word out about Lymphedema, it surely makes life harder. There is different views of treatment. I bought the "Living with lymphedema" book and was sorely disappointed. They are against using compression pumps, My vascular doc is the main doc with this. He got me a 6000 dollar compression pump and I do not think that I should use it, my abdomen is getting bigger, plus around my groin area, but my legs have lost an inch and look normal, in fact one of my ankles looks too skinny. I have been faithful with keeping the skin clean, moisturised and using compression hose, however, it has been 6 months, I should buy new compression hose, right?
JIm

[Chuck]

Guit30, you raise two issues in your post:

Is "Living Well With Lymphedema" against using pumps? The decision to have a patient use a pump is up to the patient's doctor, lymphedema therapist, and the patient, and may depend upon many factors including what the patient's insurance will cover and access to treatment. Lymph Notes does not provide medical advice.

There are many types of pump on the market, including pumps designed specifically for treating lymphedema and pumps that are more appropriate for other conditions.

There is no magic in a pump. To be effective, a pump must be used correctly-- with self-massage before and after as directed by your lymphedema therapist and the trainer for the pump company--and used regularly as directed.

Some of the risks with a pump include tissue changes around the edge of the garments and displacing lymphatic fluid into other body parts instead of draining the fluid. If your abdomen is getting larger, ask your doctor and your lymphedema therapist if you are developing lymphedema in the trunk or genitals.


Should you have new compression hose? Check with your therapist. Your hose may be due for replacement after 6 months, depending on how many pairs you have, your wearing schedule, and your level of activity. Even if your hose isn't worn out, if your leg size has changed you should probably be measured again and may need a different size.

Best wishes,
Chuck

[guit30]

Thanks Chuck, yes, "Living With Lymphedema" does not reccommend the use of a compression pump in treating lymphedema. I do not have a Lymphedema therapist, just a vascular doc, I have ben fitting myself for garments with help from the company that I use
Jim