Lymphedema Support Group

my baby was diagnosed with congenital lymphedema in feb of 06. She is 4 yrs old. unfortunatly, I am adopted , so we are not too sure about where it came from. No one on her fathers side has it, but her great gma has reumatoid arthritis and we were told that they are conected!!??!!

hi Awannabe
I don't know if mine is hereditary but it seems like I have always had swollen ankles. Is your hereditary?
Anna

Mine is congenital lymphedema.. but i am the only one in my family that has it.. They did gentic studies on me and my family.. Not even grandparents or aunts and uncles or cousins..

I've not heard of it coming on at puberty but I've been told by some medical professionals that some people that develop the condition are simply predispositioned to it.

I myself was diagnosed a couple of years ago. I suffered what docs think was a blood clot in 2004 and I started to develop the condition within a year of the supposed clot. I live in a relatively small city compared to other places in Alberta and it has proved impossible to find people here that have it.

I have primary lymphedema that came on when I was about 15 years old. It started in my left leg and then in my right in my mid 20's. Nobody else in my family has it.

i'm wondering because although no one in my family has this same thing we all seem to have some kind of problem with our legs...weird.

hi awannabe,i got lymphodema atpuberty my mother also had it but she had operation which left her horribly scarred.I dont think anyone else has it in my familybut it could miss a few generations.

hi everyone
I have an appointment with a phyical therapist when i return from my trip to Georgia. i hope it will help. i have put on about 30lbs since i have been on prednisone, so the swelling of the leg and arm could be cause by some of that. oh well time will tell.
I happen to see some photo of my grandmother a few months ago, and in it she seemed to have a very swollen right leg. I do know that she problems with her legs but I was always under the assumption that it was from blood clots. which at one time i had problems with. I will keep all of you informed if the therapist finds any thing out.
take care everyone
anna

Hi

My lympedema developed at puberty, at the age of 15, i was in high school at a time, i just woke up one morning just to realise i my right foot was swollen, The other foot started to swell when i was 20, it was so frustrating to see many Doctors and they will tell u they do not know what is wrong. I found out 8 years later that it was lympedema, all the past year i was prescribed dierutics, which is bad for lympedema. My Doctor told me i am suffering from primary lympedema, it develops at puberty, due to the lymph system that did not develop properly at birth, i dont know if mine is hereditary or not since no one in my family has it. Now i am 27 with lymphedema in both feet and it has started to affect my legs too. I wear complexion stocking . Take care, Anna

I am 46 years old and symptoms began at age 12 (1975) -- 34 years ago! While we all wish there was a cure, you should be thankful that at least there is more information and options available whereby management is done at a much younger age and while the swelling isn't so prominent. When I was diagnosed so long ago, the doctors had me seeing all kinds of specialists and guessing at what my condition/disease could be -- that's what the doctors called it back then a disease!! Being younger I was able to manage it a lot better because there was much less swelling, but as I got older I felt more concerned, had a complex and depressed because the swelling had worsened. I've done all the manual lymph drainage and therapy, but after a while that too is discouraging, lots of work, expensive, and time consuming when you have to work for a living.
Hang in there, and just keep talking about it because that is how I get through it. I talk to myself and I talk with my family. If you have to cry, then cry -- don't hold it in.