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Lymphoedema may i help?

PostPosted: Tue Sep 05, 2006 2:00 pm
by Goncalves_
Hi Friends

I had lymphoedema since i was just only 11 years old. Today i am 25. I gave up hope. Untill one day i meet my husband in England. He liked me the way i was and supported me all the way. I went to Brazil for a natural treatment this year. I just arrived. And guess wot. After listenning for 12 years that i will be having my legs getting bigger and bigger. I actually got cured, and i cannot stop thanking God and JP my husband for the support and respect he gave to me. I would love to help other people as much as i can. I know life is not easy with lymphoedema and sometimes gets you down. Please realise that there are people with worse heatlh problems, we just have to get our lives back on track and live as much happy as we can. God bless you all.

PostPosted: Tue Sep 05, 2006 2:23 pm
by patoco
Hi Goncalves

The sad reality is that lymphedema is caused by the incomplete formation of or damage to the lymphatic system.

There is simply no treatment, natural or otherwise that will cure this condition. period...

If there were, 120 million people around the world would not have lymphedema in some form or fashion.

If you had true lymphedema, you would not have been cured.

I don't mean to sound harsh, but the information used here comes from evidence based medicine, not folk lore, magic potions and so-called cures.

We expect claims to be backed up by indedependant clinic studies, verification by scientific research and the like.

You may write me off list with your questions, but please refrain voluntarily from posting this in the future.

Thank you


New Person

PostPosted: Wed Sep 06, 2006 1:44 pm
by Jimmie
My name is Kathleen and this is my story. My son and daughter in law gave birth to a healthy baby boy on August 24. He weighed 7lbs 9oz. He was put in a baby bed while he was being checked by the attending RN's. I noticed that his little feet were swollen and red in color, with all of the excitement of finally seeing this little guy after all of these months I focused on the way he looked so much like my son. After a couple of hours and all of the stuff they do after they are born, I asked one of the nurses why were his feet so swollen? she said it was a genetic...something! I then had the attending RN contact the doctor on call to check it out. My son was with my daughter-in-law in the hospital room taking care of her. She had delivered C-section and we were with the baby in the nursery. The Dr. came and spoke with my son in the nursery and said he had never seen a newborn with anything like this and would have to go home a pull out is text books. This is when I knew that I would have to start my own research. I really, did not want to interupt my son and daughter-in-law's moment of the birth of their first baby so I kept it to myself. After, doing research I need the help of everyone out there for what is considered Millroy's Disease.
Thank- You so much and God Bless

PostPosted: Wed Sep 06, 2006 1:54 pm
by patoco
HI Kathleen

A super welcome to our family and am so very glad you found us.

I was born with Milroy's....way back in 1952. It seems doctors haven't progressed much in their understanding of this condition.

Please do come and join us in our Children with Lymphedema group. It is an astounding group with the support, info and encouragement the parents give each other.

Also, wanted to mention a page on Milroy's

MILROY'S SYNDROME ... ndrome.htm

Don't forget our children's group as well.

Children with Lymphedema

The time has come for families, parents, caregivers to have a support group of their own. Support group for parents, families and caregivers of chilren with lymphedema. Sharing information on coping, diagnosis, treatment and prognosis. Sponsored by Lymphedema People. ... ymphedema/



Im new at this

PostPosted: Wed Sep 13, 2006 11:44 pm
by sully
Hi their just seen you letter about you how do I learn more on this.

PostPosted: Thu Sep 14, 2006 9:06 am
by patoco
Hi Sully

Welcome to our family here :)

Which information were you referring to? Let me know and I'll try to help.


PostPosted: Thu Sep 14, 2006 7:17 pm
by sully
[quote="patoco"]Hi Sully

Welcome to our family here :)

Which information were you referring to? Let me know and I'll try to help.

Pat[/quote]Thank you Im not sure were to begin Im new at this,my husband has the lymphedema and he is having a hard time excepting it.We dont know much about it thats why we are on this sight.My husband jon has been cancer free for 6 year with malanoma in is leg.He has 2 spots on his lung and 1 on his kidney and the doctor keep talking about the black hole in his leg, I look at my husband and you can see how scare he is.what information can you give please help by the way my name is terri and his is Jon