have a challenge

I have a challenge for Urology,Dermatology,Orthopedics and neurology.Im part of cleveland clinic in Ashtabula.
Ichthyosis since birth,severe migraine headaches at age 13. when in C.C.was by chance had expert derm. with 15 other derm.
had rare ichth.100 known cases in U.S.at that time.after many tests,photos and discussions,my brother and nephew have it too.
was told was cause of migraines,eye prob.learning dis.meningites,terets,of course severe dry skin,and said in future will have more probs.Ithought they were wrong but they were right.severe astigmatizm almost blind (eye doc.said avoid rubbing or any other kind of pressure Will cause blindness).spine dis.ddd,musclebone prob.joint prob.urinary,testicular,bladder,prostate all seceptical to cancer and other prob.IN constant and sometimes unbearable pain.have sleep disorder,depression anxiety,constant muscle spasms,have to walk with cane,probly end up in wheelchair within a year,or dead due to complications  I cant give any other info cause of security prob.

[guitartwanger]

My name is frank and my nickname is guitartwanger(I use to be pretty good) anyway I was wondering how bad this is going to get and how fast?
Im not afraid of dying its just getting ther is what bothers me.
I am getting all my things in order just in case.my mail is ***@****