A SSADH Deficiency (succinic Semialdehyde Dehydrogenase Deficiency) anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with SSADH Deficiency (succinic Semialdehyde Dehydrogenase Deficiency). You're not alone.
I have only just found this group so I thought I'd introduce myself and my family. I live in Wales with my partner Amy and three children Seren, Max and Sophia. Max and Sophia have both been diagnosed with SSADH.
We would be happy to share our experiences and stories...
I am a mam to a six year boy how has ssadh deficiency. Hes name is Hugo. He is a very happy kid with a lot of energy. We have a assistent to him at home, the assistens help is very important to Hugo and the rest of the family.
My name is Lisa, and I am from Australia. We have just found out our 2 year old son Riley has SSADH. At the moment the doctors cannot tell us anything as they have never heard of it. He is quite bubbly, at the moment he does not suffer from seizures, however he does not say any...
My doughter just have been diagnosed with this illness. She is 4 years old, a happy little energy bomb, lovely little girl.
We tried lots of things, lots of different therapies, diets, some things where quite a succes, we even had 2 breakthrough experiences.