If you need medical advice, you can look for doctors or other healthcare professionals who have experience with this disease. You may find these specialists through advocacy organizations, clinical trials, or articles published in medical journals. You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments.
If you can’t find a specialist in your local area, try contacting national or international specialists. They may be able to refer you to someone they know through conferences or research efforts. Some specialists may be willing to consult with you or your local doctors over the phone or by email if you can't travel to them for care.
You can find more tips in our guide, How to Find a Disease Specialist. We also encourage you to explore the rest of this page to find resources that can help you find specialists.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
Rare Disease Day at NIH on March 1, 2018
December 19, 2017
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I have a 7-year-old patient diagnosed with PLEVA by skin biopsy. He has a chronic and relapsing course and we are trying to find more information for the family regarding this condition, its outcomes, and long-term complications. See answer
How often does pityriasis lichenoides et varioliformis acuta turn into something more serious? See answer
My 13-year-old son was recently diagnosed with pityriasis lichenoides et varioliformis acuta (PLEVA). Our local physicians do not know much about this condition and have not been very helpful in providing us with treatments. How is this condition treated? Where can I learn about the most current treatments? Are there doctors or researchers who specialize in this condition? See answer
I have been diagnosed with Mucha-Haberman disease. I don't know how I contracted this disease. For a couple of years, I was very sick and couldn't seem to get well. Now my symptoms flare up occasionally but I have blisters all of the time. What causes this condition? How is it treated? See answer
I was diagnosed with Mucha-Habermann disease six months ago. I have tried many different treatments, but nothing has made a difference. Can you provide information on treatments for this condition? See answer