@mabelandlynne I understand your need for support. These diseases are so strange and doctors don’t now about them. I listened to a panel discussion on Wednesday and the speakers explained how doctors are taught to look for/diagnose horses and then a crowd of zebras come along and doctors are lost. These two organizations are dedicated to helping those like you who need support and direction. And the members of MayoClinicConnect are also here 24 hours a day to answer questions and give support. The first group, NORD, has information on support groups around the country. Give them a call!
https://rarediseases.org/
https://rarediseases.info.nih.gov/contact
For medical support you can research the Mayo Clinic Care Network, which consists of hospitals around the country that follow the Mayo Clinic philosophy. Here is a link:
https://mayoclinic.org/about-mayo-clinic/care-network/members
Can you call (or look up online) one of these organizations tomorrow and then let me know what you learn?