DHDDS classified as an Ultra Rare Condition

Posted by ladee @ladee, Feb 5 8:47pm

My son tested positive for DHDDS in 2024. The genetic testing finally put a name to what is going on with my son. It is progressive! He is a carrier and it does not skip generations. I have searched online I find some research however I have not found a way to connect with anyone. My hope is to find others to connect with that also are dealing with a positive DHDDS diagnosis.