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 !
Lymphedema: Hi all, I just joined this group and am glad... - LSN
Hi and welcome to the site. The LSN here is a fantastic organisation , from the US you can access their website lymphoedema.org, find their FB page Lymhoedema Support Network and follow on Twitter @lymphsupport
Hi there...I completely agree. I'm here in the US (CT). But I did find this lymphnet.org. It's the National Lymphedema Network. You have to pay to join, but I think it's well worth the year fee.
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.
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!