Comment

Comment by Mike'sDeb on June 5, 2015 at 9:49am

I also have thyroid issues. Had a nodule drained at 17 yrs old and was diagnosed hypothyroid at that time...been on thyroid replacement >30yrs.

Comment by KarenGinny - Iowa, US on June 5, 2015 at 9:39am

Linda, that is interesting. I've always wondered if there was a link between the two since I've had thyroid problems (had a nodule on one removed and been on meds for over 10 years) and been affected by FFA or LLP for the last 4 years. 

Comment by Linda from Cincy on June 5, 2015 at 8:19am

An interesting aside (or not?) I read recently that, when tested, 34% of patients with lichen planopilaris were also diagnosed with thyroid disease--as compared to 11% of the general public.    So this is definitely an endocrine issue not just some "mysterious" rash that appears with no rhyme or reason.

http://www.ncbi.nlm.nih.gov/pubmed/24569115/

Comment by Linda from Cincy on June 5, 2015 at 7:35am

Thanks, MJ, Cleveland's about four hours away which is not an awful drive, esp. if I'd only have to go a couple times a year.  I'd definitely like to participate in the research study so will contact Dr. Bergfeld/ the Clinic.  It would be nice to feel that progress being made in figuring this condition out somewhere, somehow!   

I also have an appt. next week locally with bioidentical hormone doc for some testing.  Not sure if I'll go that route but curious to see what tests show about any hormonal abnormalities or imbalances.   I'll share anything that seems pertinent or helpful.

Comment by MJ on June 5, 2015 at 5:54am

Linda, I am sorry but I don't know what the name of it was. I didn't ask further since it was not going to be an option for me. How far is Cincinatti from Cleveland? You may want to consider the Cleveland Clinic. My drive is over 3 hours but I only have to go every six months.

Comment by Linda from Cincy on June 5, 2015 at 1:05am

MJ, do you have any information about the progesterone treatment your doctor discussed with you?    Since there's obviously hormonal involvement in the development of FFA it sounds like maybe they're finally getting on the right track in trying to figure out why this is happening primarily to peri- and post-menopausal women.  And why is this a fairly recent phenomenon?

Thanks, Linda

Comment by Rachel218 on June 4, 2015 at 9:37pm

Could anyone send me the fact sheet ?

Comment by MJ on June 4, 2015 at 9:24pm

My doctor is Wilma Bwegfeld at the Cleveland Clinic on the list in Maddy's post. I was so glad to find her although I drive from Michigan. From what I gather at this point, the best treatment is some form of progesterone, which I cannot take since I had breast cancer.
MJ

Comment by Alice on June 4, 2015 at 9:07pm

Sad in Chicago, how long ago did you stop using Rogaine? I have toyed with thd idea of giving it up, especially since the new hairs are all gray and unruly, but am afraid of losing a kot of hair. It took a long time for new ones to grow out.

Comment by Maddy, California, U.S. on June 4, 2015 at 8:33pm

Just got an email from CARF asking for volunteers for a new FFA research study that is starting up here in the U.S. Here is the info:

A Research Study to Evaluate Frontal Fibrosing Alopecia

Frontal fibrosing alopecia (FFA) is a type of scarring or permanent hair loss that was first described in 1994. It typically occurs in post-menopausal women of European descent but has been reported in men, premenopausal women and other races and ethnicities. It typically involves recession of the frontal hair line, redness of the involved scalp, and eyebrow loss. There is no known cause and no established treatment.

A multicenter, data collection research study is now going on at 9 different sites across the U.S. If you, or your dermatologist, feels that you may have this condition, please either contact one of the sites directly or ask your dermatologist to contact the site on your behalf. The study doctors first request that you be seen in their clinics for a routine visit for hair loss and then if your diagnosis is confirmed to be FFA, you would be consented to participate in the study. The study would allow the study doctors to collect further information on your hair loss condition and for you to fill out an online questionnaire that may help to lead to information about what is causing this disorder. There is no treatment or compensation related to the study.

If you are interested in participating in this study, please contact or have your dermatologist contact one of the following sites closest to your home.The sites will set up an appointment for you to see the study doctor.

 

Duke University (central site)

Durham, North Carolina

Investigator: Elise A. Olsen, MD

Contact: joan.wilson@dm.duke.edu

 

Callender Center for Clinical Research

Glenn Dale, Maryland

Investigator: Valerie Callender, MD

Contact: FTitanwa@CallenderSkin.com or 301-352-1520

 

Cleveland Clinic

Cleveland, Ohio

Investigator: Wilma Bergfeld, MD

Contact: 216-444-5722 or 216-445-9110

 

The (Kaiser) Permanente Group

Orinda, California

Investigator: Paradi Mirmirani, MD

Contact: 707-651-2552

 

Northwest Dermatology and Research Center

Portland, Oregon

Investigator: Janet Roberts, MD

Contact: 503-223-1933

 

University of Miami

Miami, Florida

Investigator: Antonella Tosti, MD

Contact: CKittles@med.miami.edu

 

University of Minnesota

Minneapolis, Minnesota

Investigator: Maria Hordinsky, MD

Contact: 612-624-5721

 

University of Pennsylvania

Philadelphia, Pennsylvania

Investigator: George Cotsarelis, MD

Contact: 215-662-2737

 

Wake Forest University

Winston-Salem, North Carolina

Investigator: Amy McMichael, MD

Contact: amcmicha@wake.health.edu

 

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