Research for rare autoimmune diseases

Looking for anyone who has DPPX, rare autoimmune disease. I was diagnosed by mayo 3 years ago. Thank you

Hi Bobbi, how have you been feeling? I also have type 3.

Try to find the closest big city… thats where you MIGHT find one. I have Specific Antibody Disorder and it’s rare to and they only have drs in major cities like Boston, Chicago, New York, Miami….

Having a rare auto immune disease is indeed a conundrum. Many doctors will have no idea what you have. You actually need a team of physicians to monitor your illness. Because you have a Sjogren’s and RA it seems your cry globi anemia is associated with connective tissue disease. I have found it helpful when looking for a physician to inquire as to who has a special interest in your disease. These are often physicians who have the disease themselves or have a family member or friend with it. On your team, you need a rheumatologist, a hematologist, an immunologist. The focus of care with these complex immune diseases is usually monitoring to look for progression or associated problems that may crop up. There’s often no specific treatment for it unless a complication occurs. because this disease can have so many facets. It’s important to understand where you fit into the classifications. I agree that a university based clinic or a specialty clinic like Mayo, Cleveland clinic, etc. may be your best bet. you may also check with the organization Nord national organization for rare diseases as they may be able to direct you to a doctor in your area familiar with this diagnosis The more you know about your disease the better off you’ll be and the more comfortable you’ll be with how things progress. I wish you luck in finding someone well-versed in this. I too have several auto immune diseases, some of which are rare and have faced similar dilemmas.