Anyone out there have congenital lymphedema? i'm not sure i spelled that right.?

just wondering if anyone else in the world has congenital lymphedema like me, ive never met or spoke to or even heard of anyone else having this disease. it would be very cool to talk or chat with someone who did.

GREETINGS !

Yes there are lots of people out there who have congenital lymphedema, some refer to it also as Milroy's Disease, primary lymphedema, and you are not alone.

I'm the owner of Lymphland.com and Lymphland International Lymphedema Online Support Group. We have many members who are primary lymphedema patients. I'm a cross between primary and secondary. I am a cancer survivor but since I have developed lymphedema in so many places in my body, the doctors are inclined to believe I was born with the condition but never knew it until illness and surgeries set it off.

My group has an online chatroom that is open every day of the week where we meet and chat, we will be in the chatroom tonight atlantic time 9-11PM if you want to drop in, Annette aka Mac, will be the host tonight. Feel free to check out my site, http://www.lymphland.com, the button to join the support group is on that page, also at the top is the directory where you can find all sorts of topics along with the chatroom, just look under C for chat.

Hope to see you in the group and chats! Nice to meet you!

Tina

Hi Ju_Bean

Sure, there are lots of us out there born with congenital lymphedema. I was born with it...lived with it everyday of my life for 54 years. We have even traced it back in my family to the 1800's.

Do you have an "official" diagnoses? What kind of treatment and maintenance do you take part in?

The version of lymphedema I have is called Milroy's Syndrome.

Pat
Lymphedema People
http://www.lymphedemapeople.com

hi JuBean, I do and it's the pits. I am a part of the Lymphland support group and have to say it's the best. You gotta learn all you can to protect yourself from infection and stupid doctors who hand out diuretics like candy. There's alot of us in the group, but seems we are alone until we find the group. I know it's helped me alot. I used to be really shy about speaking my mind and now being a member with alot of others I can speak my mind and tell doctors what's right and not right. Therapy helps you too, have you had it yet?

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