Maddy, California, U.S.

Female

United States

Profile Information:

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?
Scarring alopecia
Are you age 18 or older?
Yes - I am 18 or older

Comment Wall:

  • Rita - Canada

    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.

    Jun 29, 2013

  • Rita - Canada

    Thanks Maddy.

    Jun 29, 2013

  • Hopeful

    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

    Oct 6, 2015

  • Hopeful

    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?

    Oct 8, 2015