Any adults here who had Dermatomyositis as a child?

[unapatriciated]

My son was diagnosed in 1991 fought it for over ten years and is now (at the age of 30) dealing with the aftermath of JDMS.
It has been difficult to get follow-up care as an adult (he is on ssi and medical).
I'm interested in discussing alternative therapies that may have worked for someone who has had JDMS that continued into adulthood.