Comment

Comment by Gittan on December 27, 2016 at 12:40pm

I am swedish too. We can be in touch. Have sent you my contactadresses

Comment by Jane on December 27, 2016 at 11:35am

Hi, I am a woman from Sweden recently diagnosed with FFA. I wonder if there are any other members from Sweden in this group?

/Jane

Comment by Leni on December 19, 2016 at 9:49pm

Just wanted to share... Just started following this page on Facebook.

Cicatricial Alopecia Research Foundation (CARF)


Also, I contacted a doctor in Florida Dr. Raymond Fertig. I had inquired about finding a specialist in my area. Here's what he sent me.

Please look at the The Cicatricial Alopecia Research Foundation (CARF) website. If you subscribe to the CARF site they will send you a list of recommendations in your area. You can also call them number included below. I wish you the best.

http://www.carfintl.org/
Tel: 1-310-801-3450

On page click "join" on right side of page or here is direct link:
https://www.registration123.com/CARF/MAIN/

Comment by Judy on December 19, 2016 at 2:01am

PS: forgot to mention amount of hair loss. About 1/2"
On my forehead but none on the sides. Lost all hair on eyebrows, arms and legs.

Comment by Judy on December 19, 2016 at 1:52am

Kathy, my timeline was: 1-1.5 years for the forehead
hair loss, eyebrows started 4 or 5 years earlier but my doctor kept telling me it was caused by 'getting older'! When the hair loss and scabbing began my hairdresser told me To go to a dermatologist immediately. The derm was very familiar with FFA and I started treatment right away---clobasel (sp) and plaquenel. I feel very fortunate and to have found a good doctor. Also lucky I didn't loose as much hairline as some of the others.
Yes, I imagine there are many positive and happy results out there. Wishing success to all.

Comment by Airam-FFA on December 18, 2016 at 10:56pm

Hi Maddy - interesting what you say about the flu jab. Might be a factor. I put my FFA down to stress, but I think my hair loss has also co-incided with taking the flu jab for the first time.xOx

Comment by sallylwess on December 18, 2016 at 5:00pm

Kathy, I am so sorry for you diagnosis.  I decided to share my story again in word and photo. A picture is worth a thousand words, so I am sending a photo to show how much hair I have lost.  This is not a success story.  I first saw a derm in 2006 for a pustule on my scalp.  I already had no hair on my arms or legs.  In 2010, during a time of great loss and stress, my hair thinned greatly but I barely noticed as I dealt with the death of my daughter.  In 2011, I lost my eyebrows.  I was diagnosed with FFA/LPP in 2013.  I have used clobetasol, finesteride, plaquenil, and had steroid shots.  I saw the same doctors you have seen at the U of C.  They prescribed finesteride and plaquenil.  I could take neither.  Steroid shots gave me rashes and more inflammation.  I now use only clobetasol solution because all other forms of clobetasol cause my scalp to inflame with burning pain.  I also sometimes use protopic.  I am going to start minocycline soon.  I am waiting for the holidays to be over before starting a new medication.  I will also start mycophenolate (celcept) soon.  I am getting over a viral infection, so I don't want to take the immune suppressant until I am well.  This will be my final ditch effort to save what I have left.  It has been a long journey, but I have come to more acceptance of the loss than I ever thought possible.  Kathy, send my a private email and we can connect.  I hope to help put together a FFA support group in Colorado soon.

Comment by Maddy, California, U.S. on December 18, 2016 at 4:48pm

Hi Anne Louise, Yes, my eyebrows did start to go early on! I immediately started using Latisse and now use Rogaine on them nightly. I still have enough to get by. The hair on my arms is very fine and short, but it's there and I still have to shave my legs but not as often as I used to. 

Comment by Anne Louise on December 18, 2016 at 4:36pm

Judy, Liz and Maddy, and anyone else who may be in the much hoped for burnout stage: I am wondering how your hair loss progressed. I recall reading somewhere that there was a theory that those who lost eyebrows first had a more mild case, but those who lost body hair had a more severe case. Well I lost all of my eyebrows first but have also lost all the hair on my arms and legs! So I don't know if there is any merit in that theory. But true cases of burnout give the rest of us hope, so please stay on this site for the rest of us! Thanks.

Comment by Maddy, California, U.S. on December 18, 2016 at 3:32pm

Hi, I have had FFA for 10 years and have been on this site for many years. I do not post that much anymore because my FFA seems to no longer be active. I had three major hair sheds in 2006, 2007 and 2008, but since then I have not had any major hair loss. I notice a few weak hairs now and then, but nothing like the drastic hair loss I experienced in the early years. I am not on any medication now (although early on I did try steroid shots and took doxy for a few years), except I do use a little Rogaine in the front most nights. I feel that it does make the hair that is still there a little fuller. I ended up losing about 1/2" in the front and probably an inch on the sides...but I can still cover it for the most part. I feel that my FFA was triggered by the flu vaccine. I had never had one until 2006, and my first major hair shed (temples) started about two weeks after that first vaccine. I did not connect it that year, so had another one in 2007, and it happened again...finally when I got the one in 2008, I figured it out because I always went to my derm a few weeks after that shot complaining of more hair loss. Anyway, I suspect the triggers are different for everyone, but mine was definitely the flu vaccine and I have not had one since 2008 and no more hair loss. 

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