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Lymphangioma ( lymphatic malformation)

Home page!

A Home page about a RARE CASE OF LYMPHANGIOMA

Hello and welcome to my web page.

It is about 12 years that I am suffering from Lymphangioma. So far I haven't found a treatment for my ailment. So I decided to build a Home page to obtain information and probably a treatment for it. This Home page has non-profit purpose and intends to find people who have information about Lymphangioma and its treatment (e.g. Dr.s , medical centers and etc.) and to know the people that are anguished with the same disease .So we can make contact with each other and share our experiences. I need your experiences in this case and am very much obliged to anybody with any kind of help. Thanks.

What is Lymphangioma?(in general) Lymphangioma is a lymphatic malformation and is rare defect in the lymphatic system.It is an inborn tumor of the lymphatic system that, in some rare cases, may be inherited as an autosomal recessive genetic trait. This progressive disorder is characterized by a large sac filled with lymph fluid protruding from the skull at the nape of the neck. The Lymphangioma is thought to be caused by a failure of the lymph system to properly connect with the blood vessels in the neck and thus with the appropriate blood circulation system.

My case of Lymphangioma :

the full name of my illness is :

Systemic Lymphangiomatosis.

My case of Lymphangioma is very rare.In 1989 when I was 12 years old , I was diagnosed with Lymphangioma on my right leg and foot in Isfahan . Then I had 2 operations on my leg but they were not successful. After operations I had Radio therapy on my leg. Radio therapy improved my condition a little but it hurt the skin of my leg. In 1991 I went to Germany to find a treatment for this very rare illness.I stayed about 2 years in Germany at Kinderklinik and Grosshadern hospital in Munich. There I had Interferon 1.2 mg injection everyday for 18 months and . Despite suffering from Lymphangioma which has been always with me since 1989 I have tried to run a normal life and I have been almost successful. I have been admitted to university and now I am studying my favorite course which is software engineering .Now I am catching up with my every day schedule and I very much hope to find a cure for my rare disease.

Special thanks to Prof.Dr. Hadorn my doctor at Kinderklinik in Munich and my family whose help to me was very great.

Please if you have any information about this ailment and its treatment or if you have experiences in this case send me.You can just sign my Guestbook or email me :

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Lymphangioma

Please feel free to email me with any Question and ask what you want(in English or German).

Thank you very much for visiting my page and please help me if you can.

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