Knowledge is power so educate yourself and be pro-activev in managing your care.
I live with the challenges of GVHD after a bone marrow transplant in 2018. At times it can actually feel worse than my initial diagnosis of AML. I have a wonderful team of doctors thru the University of Michigan. They are very knowledgeable about GVHD & I trust them completely. Knowledge is power so educate yourself on this disease and be pro-active in managing your care. If someone treating you is ignorant about GVHD, either get another doctor or educate yourself enough to know what is “good” care and what is not. Also, PT (physical therapy) is great, too, to help with the musco-skeletal problems of scleroderma, a common GVHD symptom.