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Esophageal Lichen Planus

Autoimmune Diseases | Last Active: Oct 11 2:53pm | Replies (108)
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@sadea0208

I appreciate your response! I feel alone with this disease. The doctors and specialists I've seen have never seen a patient with ELP. I was diagnosed last year although I had symptoms in my esophagus which spread to my mouth. My lips and mouth sting with even toothpaste! My esophagus stings with carbonated drinks! Now I have a few lesions on my legs. I've now lost over 30lbs.
Thanks again!

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Replies to "I appreciate your response! I feel alone with this disease. The doctors and specialists I've seen..."
Becky, Volunteer Mentor | @becsbuddy | Mar 22, 2023

@sadea0208 Sounds like you’re having a bad time with ELP. Have you been able to go to a university hospital in your state? They are much more up-to-date with rare diseases.
You may also want to contact NORD- the National Organization for Rare Diseases. They are able to help with all sorts of information.
https://rarediseases.info.nih.gov/contact/
Do you think you could contact either of these resources?

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