Maddy, California, U.S.
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  • United States
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About Me
I have been diagnosed with frontal fibrosing alopecia and am just devastated. I think mine is brought on by an autoimmune reaction, so is very hard to treat.
Do you have alopecia? (Choose appropriately)
Scarring alopecia
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall (7 comments)

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At 3:05pm on October 9, 2015, Hopeful said…
I cannot thank you enough!!! Big, big hugs!!
At 11:55pm on October 8, 2015, Hopeful said…
If you ever remember that other doctors name, I would truly love to have it. I cried when I found Dr.Goh as I have been to several different docs that basically tell me they don't have a "magic pill" for me. I was hoping she would be my hero. I am a nurse and the hospital i work at started forcing the flu shot on us or we have to wear a mask for 12 hours while we work. My hairloss started 1 year after implants and 7 months after my first flu shot, so not sure which or if either were the culprit, but both on my mind. I have been considering removing my implants, but worry about disfigurement. If I knew for certain my hairloss was related, they'd be out tomorrow. So you had regrowth after explantation? Did you have en-bloc? Any regrets? So word is Vitamin A is bad for FFA? I've never taken supplements before my hairloss.
At 10:13pm on October 8, 2015, Hopeful said…
I am new to site and so curious about all that has been tried and possible triggers. I do the same as everyone here- wonder if it was the flu shot, Botox, breast implants, brazillian blow outs??? Should I admit to all of those things? Anyways, now I don't even color my hair....how do I read these posts more thoroughly?? Is something wrong with Vitamin A? I have a hair supplement that I have been taking that is loaded with it.
At 9:53pm on October 8, 2015, Hopeful said…
Hi Maddy,
I have an appt with Dr.Goh! That's who I am waiting for and have an appt in December. I was able to see a local derm today and although he knows nothing about frontal fibrosis, he was willing to put me on the doxycycline. Now that I am getting that started, I may try to be patient until I see her. I live about 2 hours from her Santa Monica office, but feel she is worth the drive just based on her bio. Can you tell me more about your experience? Has anything really helped? Do you do an autoimmune diet? Have you ever looked into Prp?
At 1:08am on October 6, 2015, Hopeful said…
I see these posts are a few years old. I was just told I probably have FFA, but the "specialist" who is to confirm is on maternity leave until 12/15. I live in your area and am hoping you can tell me who you see for your condition. Fingers crossed- I want to get this figured out before I lose too much more hair! Thanks, Cristy
At 11:58am on June 29, 2013, Rita - Canada said…

Thanks Maddy.

At 8:34am on June 29, 2013, Rita - Canada said…

Maddy, I believe it was yourself that was to use doxycyline twice @ day along with the clbetesol. i have been given doxy as well but to take once @ day. Were you able to do it without getting stomach problems as pharmacist says you can eat dairy or have calcium at the time of taking the doxy and should definetely take w/food etc. etc. Hope you're ok.

 
 
 

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