Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: ariadne on December 05, 2011, 06:05:58 PM

Title: Thalassemia & mitochondrail/mitobolic Disorders
Post by: ariadne on December 05, 2011, 06:05:58 PM
Has any body been diagnosed with SCADD (short chain acyl-CoA dehydrogenase)?
If so are you on any specific diet for it or medication?

I was diagnosed with SCADD when I was 17 about 5months after I had my first stroke like episodes, to try figure out what could of caused the paralysis.
The doctor I had gave up on me once he gave me diagnosed me with SCADD, since they feel this disorder is not cause paralysis like the other mitochondrial/Metabolic disorders.
Also insurance wouldn't cover any more DNA/Genetic testing. I am currently seeing a new neurologist who watched her sister growing up having a stroke and she was able to get insurance to cover testing. So I am in the process of more mitochondrial testing.