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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

 

Comment by Sad in chicago on June 4, 2015 at 4:00pm

I agree with all....summer is a little tougher with wind, swimming and exercise, but as you noted, there are worse things.   I should eat healthier and am working on that.  I did stop taking shots and extra medications; I don't even use rogaine any more.  If I see a derm who does hair restoration surgery (transplant) and there is hope i will certainly let you all know.  

Comment by Mel on June 4, 2015 at 3:17pm

Thank you, Jean. It can be depressing, but I do love that I seem to feel just fine. I can still exercise and hike. I was diagnosed on the day of my 51-year-old friend's funeral. This is not what I imagined for myself, but grateful that that's all it us got now. I've read how one autoimmune condition may make you more vulnerable for another so I'm eating healthier than I ever have in my life !

Comment by Jean on June 4, 2015 at 3:02pm

Like everyone else, living with FFA can be really depressing but the other day, I made a conscious effort to look on the bright side and have come up with a few positives:

I no longer have to shave my armpits

I haven't grown 'granny hairs' on my chin

I don't have hairs on my top lip any more

I don't need to shave my legs

I've had my eyebrows tattooed and they're a much better shape than pre FFA

I have no pain, FFA isn't contagious and it won't kill me!

I've got a lovely wig that I wear when my hair looks a mess 

I have my 'down' days but several of my friends have far worse ailments - some life-threatening.  At the end of the day, it's only my hair and I'm determined not to let FFA ruin my life!!

With my very best wishes to you all

Jean

Comment by Mel on June 4, 2015 at 1:58pm

I agree, Chicago. I go back for my second trip to the dermatologist next week and I think I'm going to tell them no more shots. One round was bad enough. It wasn't that terrible, but they do say there is NO KNOWN effective treatment. So why inject ourselves with stuff that leaves a dent and possible speeds it up?? I want to do anything that possibly makes it go into remission, but nothing I've read shows any link between remission and shots. I am still on the AIP diet... almost a month now. I feel no different, but if our condition is a skin condition (is it?) the skin is a last priority organ so it will take time... I was also trying castor oil. Seems to help some on eyebrows. Coconut oil seems so soothe my head. Leaving it on at night to see if it calms it down at all. Such a mystery.

Comment by Sad in chicago on June 4, 2015 at 1:35pm

My dermatologist was familiar enough to diagnose, but certainly has not been able to do anything about except declare she thinks there is nothing you can do.  She has recommended another derm who specializes in hair restoration surgery, I have called to see if they are familiar or had success with FFA, but have not heard back, which I think is so rude!  Anyway, if you are still interested, I will give you the name of my dermotolgist.  As I said great at diagnosing, but no great answers.

Comment by okalopecia on June 4, 2015 at 1:17pm

If your dermatologist  is knowledgeable on FFA, would you mind sharing his/her name and contact information. I live in OK and have been unsuccessful at finding and educated doctor with FFA experience. I am more than willing to travel to ensure I get best advice/treatment possible. I'm pretty frustrated with the dermatologist search. There are many doctors on the CARF list, however, I would like anyone's first hand experience as well. I know some of you are happy with your dermatologist and I would appreciate if you would share their information. If you don't want to post their information on here, you can email me directly: ddilldine@tds.net  Thank you in Advance

Comment by Sad in chicago on May 7, 2015 at 1:09pm

Agreed.  I hope it helps you.  I never had rash or spots, so didn't feel the need to treat.  Anyway, it does seem to be slowing down and I am just living with it, what can you do.  It is for sure the hair will never grow back.

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