Sturge-Weber Syndrome Community

Hi everybody. Here I want to tell you a story of my family.
My mother was 24 when she born a baby. The deal was that it was a little town in Russia, and it was 1979. The child was born with a birthmark on her face and doctors could't say was was the disease. A year later mother went to Mongolian hospital and there got the results. SWS. It was a verdict. Doctors said that something was wrong with our genetic and nobody could treat her. Her headaches were awful, analgin was the only medicine. 5 years later it happened that mother was pregnant again. Doctors in my town told she had no chances to born a baby without SWS. Bur she was lucky and I was born and now tell you the story. Actually my sister can't speak, doen't understant the meaning of the words and nobody can help in her headaches...Now she is 26. It seems that her health is improving. But who knows. May be it is just dreams, we don't know. On the forum i read that SWS has no clear genetic pattern, and two affected individuals almost never arise in the same family. I want to believe that it is true!

Ps Sorry for my English, it is not fluent
Sveta

Sveta:

Welcome. Please let me know if there is anything we can do to help.

Sturge-Weber syndrome doesn't run in families. However, there have been cases where more than one family member has a port wine stain.

If you would like more information about SWS, please use the "Ask the SWS Expert" feature on our home page. Here is the link: http://swscommunity.org/expert/ask_comi.php

If you would like our free informational pamphlets, please email me at the address listed on the Contact page: http://swscommunity.org/contact.php

Again, please let me know if there is any way we can help.
Glenda