Frontal Fibrosing Alopecia

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

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  • Maddy, California, U.S.

    Hi Louise, I am responding to your message here since I could not figure out how to send a private one either. I'm sorry you are feeling so down. FFA is definitely an ongoing struggle. Just know that there are other people out here feeling the same way. Sending you a big hug. 

    Feb 5, 2023

  • Elizabeth W

    In February I had hip replacement surgery and developed blood clots on Memorial Day weekend.  This past week my hair's texture seems to be thinner and more like a baby's hair.  Has anyone experienced a similar situation?  I was diagnosed with FFA in 2018.

    Jun 6, 2023

  • pauliegirl

    Hi Elizabeth! Oh my goodness you have been through a lot! Hopefully the clot situation is resolved. My question for you is have you been losing hair diffusely (all over, not in patches)? I ask because while I have a seven year old diagnosis of FFA, I developed telogen effluvium after a Covid infection TE is a self resolving diffuse hair loss. I lost hair in handfuls over a six week period. And what was left was dry and just a generally yucky texture. It seemed really thin, but it was really just because I lost hair density, losing approximately 60 to 70% of my hair. Again, telogen effluvium is self resolving, and the hair grows back. It generally hits 2 to 3 months after a very stressful situation, like having a baby, enduring a significant death loss or a serious illness.

    Hoping the best for you!

    Jamie

    Jun 6, 2023