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Rare scalp Autoimmune disease… lichen planopilaris
Autoimmune Diseases | Last Active: Sep 5 7:44am | Replies (49)Comment receiving replies
@patsydell your situation sounds really bad and difficult for you. When did you get this diagnosis? When you were first diagnosed, were you started on any medication? Are you still taking it?
Have you thought about going to a comprehensive medical center or university hospital? Here is also a link to an organization that should be able to help you find a good doctor:
https://rarediseases.info.nih.gov/
Can you make some calls on Monday? Let me know what you learn. I really worry about you.
Replies to "@patsydell your situation sounds really bad and difficult for you. When did you get this diagnosis?..."
@dancing1 You might also want to find a new rheumatologist. Your problem with LPP must be so frustrating and disheartening!
Here is the website for the genetic and rare diseases organization:
https://rarediseases.info.nih.gov/. And also NORD, national organization for rare disease:
https://rarediseases.org/
Both groups have info and patient resources for diseases like yours.
Will you give one of them a call? I’d love to hear that you’ve gotten some answers
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My scalp has been doing this for over a year now red, flaky and hair falling out everywhere every day. I’ve just thought it was part of sjogrens disease. Hoping you find help. I’ve tried oils and many shampoo products nothing had helped. I use Routine shampoo and conditioner. But it continues to be awful. So sorry for you also. It’s miserable I know.