Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 241
Latest Activity: 14 hours ago

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Started by Rachel218. Last reply by NatalieW 14 hours ago. 5 Replies

Hi my name is Rachel and I'm 30 years old. I recently was just diagnosed with frontal fibrosing alopecia the end of April. My hair loss started December 2012. I saw a dermatologist the beginning of 2013 Who thought it had may have been TE from…Continue

Same Story

Started by Mel. Last reply by Mel on Monday. 5 Replies

I am new to this site, diagnosed with FFA about three weeks ago. I just read SandyA's post from April 9 and that is so close to my experience. I've always had a high forehead and I have bangs so never noticed hair loss. Went in to the dermatologist…Continue

Help Please

Started by okalopecia. Last reply by Jen S. May 14. 11 Replies

Hi, I have been trying to get diagnosed with what is causing my hair loss. FFA has been mentioned twice but not confirmed. I've had two biopsies and seen 4 dermatologist so far. I'm hoping some of you are willing to share your experience with FFA…Continue

Skin surrounding follicles now black after being inflamed and red??

Started by SandyA. Last reply by MJ May 8. 11 Replies

Hello all!I was recently diagnosed with FFA about 3 weeks ago at the Thomas Jefferson University Dept. of Derm. after being referred there by my local dermatologist for an unusual skin rash on my face and neck. I really hadn't noticed the receding…Continue

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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.

Comment by Blondie on May 7, 2015 at 12:48pm
When I first went to my Derm my head was burning and my hairline was receding.. He gave me steroid jabs ..and put me on Planquenil and Toplical ointment ..he recommended Regaine and tumeric
..5 months on the burning rash and spots have disappeared , my hair loss had stopped and I feel great.. I do not feel like I am putting myself through anything I am just treating an ailment..it may be a great big coincidence ..but I know I feel a whole lot better now I am doing something than I did when I did nothing and hoped it would not get worse..if I had cancer I would get treatment so I am getting treatment for this...I also eat healthily and exercise but I was doing that before and I got FFA so that didn't help..I think we all have to do what seems right for us ..but it's certainly working for me and there is no evidence as to what causes it
Comment by Sad in chicago on May 7, 2015 at 12:27pm

Ladies, I really don't understand why you put your bodies through all these wierd medications and toxic stuff.  Isn't it bad enough that we have been afflicted with this ridiculous condition?  My derm tells me that all the meds you are trying have no evidence of working, gave me the same options, but I took a pass.  I am doing my best to be healthy, eat right and exercise (although always a problem at the gym with the way I look!!!!!), and just get through this and try to enjoy life as best I can and be thankful it is not terminal or something really awful.  With my wiglets I look as reasonable and as much myself as possible and that is the best we can do.  I am trying not to stress,although I certainly have my days.  But I feel taking medication for malaria, etc. can only add to the toxins or whatever that have already caused this. 

Comment by okalopecia on May 7, 2015 at 11:42am
Got it, thank you Sandy
Comment by SandyA on May 7, 2015 at 10:57am

Lo, I just emailed you a copy of Debs sheet. Hope you got it.

Comment by Lo on May 7, 2015 at 7:01am
Sandy, can you send it to me as well? Lobertella@yahoo.com
Many thanks!
Comment by SandyA on May 6, 2015 at 10:50pm

I recently received the info sheet from Debs so would be happy to forward it to you.

Comment by okalopecia on May 6, 2015 at 10:46pm

Debs could you please send me a copy of the FFA fact sheet, or if anyone that has a copy that would be willing to forward. Email: ddilldine@tds.net

Comment by Donna on May 6, 2015 at 4:16pm
Has anyone experienced withdrawal symptoms in stopping clobetasol? I have been on it for over two years and it did not control the inflamation. I am concerned to stay on it but in going to every 2nd day experience low level pain om scalp and feels worse than it ever was before using the clobetasol. On reading up on-line it sounds like withdrawal can be a real problem.
Comment by Will Be Healed on April 3, 2015 at 11:31am
MJ, my homeopathic doctor recommended the moducare and I spoke to my derm doctor about it since I will be taking plaquinal after I get my last eye exam today and they confirm it is ok for me to take together. The derm said it was fine to take both.
 

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