I am new to the Rareshare community, recently visited the Mayo Clinic and have a chronic version of CLS.
I am a 39 year old woman, recently married in September 2008. I had my first episode about 3 months before my wedding. At the same time, I was diagnosed as hyperthyroid and am currently hypothyroid, taking thyroid replacement. Me and my husband are trying to plan our family and are trying to make an important decision.
I was very interested in the member with the profile “Saetienne”. I know she is from Minnesota and went through a pregnancy having CLS. I was really interested in contacting her to learn more about her experience. Does anyone have any contact with her? If so, do you think she would mind contacting me? Does anyone else have knowledge of this kind of matter?
We are trying to look at all our options – pregnancy, surrogacy and adoption. Honestly, it scares me to get pregnant. I worry it would only intensify my situation and make me very sick. Especially after I learned that SCLS can be transferred to the baby from my recent visit to Mayo. Just having that knowledge makes me feel a bit hesitant to get pregnant and leads me to believe my other options need to be considered.
If anyone would like to contact me, please contact Arturo at
and he can pass my email address.