Lichen Sclerosus
What is Lichen Sclerosus?
Lichen Sclerosus is a rare disorder characterized by white patches on the skin.
| Name | Description |
|---|---|
| Loretta | This is a terrible disorder, I was diagnosed at Mayo clinic in AZ August 16, 2010. I use Vanicream 2.5% hydrocorsone 2 x day, for flare ups, I use clobetasol .5% 2 X day until it is under control again, then back to the maintance Vanicream 2 x a day. Tucks helps with flares, and Desitin zinc oxide ointment to calm the tissues after rubbing in the vanicream. I'm also use vagafem 10mg 2 x week, and prem-pro daily. This regime works for me so far, does anyone else have any treatments that work for them? I am seeing a urologist at UCLA for testing to check if it has effected my urethra. Had a perineoplasty done in March this year to remove scar tissue caused by the Lichen. Any yeast infection will cause a major flare and cause the Lichen to flare up. It feels like your bottom is in fire. |
Last updated 22 Sep 2010, 01:51 PM
22 Sep 2010, 01:51 PM
what kind of steroids are you on? Do you take a pill, or use steroid cream on the effected area? I'm being treated for Candida Glabrata at this time with IV Caspofungin for 6 weeks, it seems that yeast infection aggravates the Lichen. I'm 63 and have been in menopause for 6 years, am being treated with vaginal hormone Vagafem 10mg 2 x a week. Seeing my urologist at UCLA for testing to see if it has effected my urethra, there are different oponions as to what causes it, trama to the area, hormone imbalance, to genetics. I don't think they really know for sure, there is no cure at this time, all they can do is treat symptoms. Would like to find a clinical trial, they need to find a cure for this.
30 Jul 2008, 03:02 AM
I was just diagnosed with Lichen Planus definitely today. I had biopsiy results and saw the expert dermatologist at Hopkins. I am on steroids for it. It is effecting my mucous membranes
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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
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- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Lichen planus
Created by judithdavis3 | Last updated 22 Sep 2010, 01:51 PM
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