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Schwannomatosis and Genetic Testing
Brain & Nervous System | Last Active: Oct 7, 2018 | Replies (11)Comment receiving replies
Hi, @troyanos99 - welcome to Mayo Clinic Connect.
At Mayo Clinic, the Neurofibromatosis Clinic would work with schwannomatosis. What I learned is that if a child shows signs or symptoms, then they would look at doing testing.
This is some information on Mayo Clinic and neurofibromatosis: https://www.mayoclinic.org/diseases-conditions/neurofibromatosis/symptoms-causes/syc-20350490.
You might also be interested in this article, which is about a boy affected by neurofibromatosis who has been seen at Mayo Clinic: https://news.mayocliniclabs.com/2018/01/18/genetic-tests-coordinated-care-research-provide-hope-patients-genetic-neurological-disease/. You'll note that the head of Mayo Clinic’s Neurofibromatosis Clinic is also mentioned in this article.
If you'd be interested in an appointment in the future, here is a link from which you may arrange that: mayocl.in/1mtmR63.
How did you come to be interested in genetic testing available for the children of schwannomatosis patients who show no symptoms? Is this something that affects you or a loved one?
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Thank you so much for the information! Yes a sort of step daughter's mother has this condition as well as her aunt. She and her father are always on edge when ever there is a back ache or a little bump on her hand. I was just thinking that if there was a test to find out if she has the gene, then it may ease the constant worrying of the unknown. Then again, knowing at a young age, 20 , may not be so great either. Her mother was diagnosed in her 30's. But if there have been some advances to this condition and early detection is a plus then maybe
going through a genetic test , if there is one, would be a good idea. Thoughts?