Lymphedema: Hi all, I just joined this group and am glad... - LSN

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Hi all, I just joined this group and am glad to find any and all info I can get. I'm from the U.S. And I swear they are more educated about Lymphedema in other countries. I hope to gain and share as much info as possible. Thanks for the site !

12 Replies

Hi and welcome to the site. The LSN here is a fantastic organisation , from the US you can access their website, find their FB page Lymhoedema Support Network and follow on Twitter @lymphsupport

Best wishes

Hi there...I completely agree. I'm here in the US (CT). But I did find this It's the National Lymphedema Network. You have to pay to join, but I think it's well worth the year fee.

I had to go to Evanston, Illinois to see a Doctor who specializes in the lymphatic system. I live in Denver. Most doctors only think of cancer patients. There is primary lymphedema which is my problem.

Pixie violet, would you mind sharing the doctors name? I am looking for a doctor doctor who specializes in this field.

Dr. Joseph Feldman. Also a Dr. in Santa Monica. You need to search them. Feldman. Evanston at Northshore medical.

Thank you so much. I will be sure to look them up.

The US is far behind info and treatment.

The docs think we are all just fat. There is not much treatment and folks who can't get out of the house can really forget it. BUT! There is You Tube. Full of lecture sand self-care instructions plus news on updates. Hope it helps!

You are right about them thinking we are just fat. Of course, with swollen feet and legs, it is hard to exercise. If I sit at the computer, my legs swell. I have to keep limbs elevated. I just changed my PCP because he does not understand my need for Access-a-Ride. Difficult to access regular public transport at age 74 when you cannot walk three blocks. My swelling comes and goes but is never completely gone.

Maybe if you contact services for the aging they will help you.also maybe you could find an alternative doctoer.There are lists of docs on lymphedema sites. If all else fails call pro bon elder law for free law help.~~~Hope this helps

I'm from Houston, Texas USA and there is a lot of information on the web about Lymphedema and it is growing every day. I've had this condition in my left leg from toe to waist for 25 years. If you have any questions let me know and perhaps I can help you.

I agree about the medical system here in the US bring behind. I basically had to diagnosis myself to get my PCP to refer me over to a lymph massage clinic. Thank goodness for the Internet and these boards.

Twenty or so years ago my sister's GP (here in the UK) was talking about sending her for a de-bulking operation, which we didn't like the sound of. She had a friend from Philly who'd married a local chap, who was a great help, bringing back leaflets when she visited the States. It was at a time when specialist units were only just starting up in the UK, and before I had Internet access and there probably wouldn't have been much information available online, anyway. So, thank you, USA!

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