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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 stress. I also had a miscarriage in September 2012 and my obstetrician said it was hormone related from the miscarriage and that it would last about a year. My daughter Who I got pregnant with in June 2013 just turned 15 months old and my hair loss hasn't stopped. About five or six months ago I've noticed burning, tenderness and itchiness to my scalp . I also noted the crown of my head and my temples losing hair the most. I finally went for a second opinion to see another dermatologist who did a biopsy right away and discovered it's FFA. I'm hoping to find some more answers as to why this is happening to me. I see that it's more common in postmenopausal women which I feel that it could possibly be hormone related. I'd like to get to the bottom of it. They started me on topical steroids and Doxycycline. I also just started Rogaine. It's nice to meet all of you . It's nice to have people who I can relate to and have a good support system.

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Permalink Reply by DragonandFox on June 16, 2015 at 5:39pm

Hi Rachel. I was diagnosed in Jan this year (2015).  I turned 52 in Oct. 2 weeks before my birthday my 21 yr old gorgeous, kind and notably talented musician nephew died by suicide.  My hair started falling out in droves right after that.  I noticed some inflammation sometime in 2013, but it wasn't red or itchy, unless I wore hats. It was just that the hair follicles along the line of my forehead were black.  I wondered what it was, but just thought it was an anomaly and didn't pay that much attention to it.  I had a great deal of stress due to work place problems from 2010-2011.

My dermatologist 1st had me do patch tests. the dermatologist who did the tests was a Professor at Yale and when I walked in his office for the tests he said he'd do them, but he was sure I had FFA.  He was a bit grim about the prognosis and told me he felt sad for my loss, but I should not let "hair" get the best of me.  UGH!  Fortunately my Dermatologist is also a Plastic Surgeon and knows that, "sure, hair is not everything, but, it can be very demoralizing for many people, especially someone like me whose hair has pretty much been a beauty trademark of mine.  :(  He did a biopsy and since then, Jan he's been treating me. 

Now, I'm wondering about some alternative hair styles for thinning hair n the FFA area's and hoping this AID (*sigh*) actually goes away.  My Derm says he's hoping my immune system will "reset" itself.

it does suck, but you have support here and can commiserate and find idea's on how to deal. 

Permalink Reply by MnM on June 22, 2015 at 10:01pm
Hi Rachel, sorry to hear about your diagnosis. I'm 32 and I was diagnosed almost four years ago. When I was pregnant my symptoms went away completely, it wasn't until I stopped nursing that they came back, and they came back with a vengeance. Good luck with treatment and welcome to the group!
Permalink Reply by Rachel218 on June 24, 2015 at 9:24am
Hi MnM unfortunately my symptoms didn't go away completely when I was pregnant hut they did slow down some. I recently started noticing the burning, itchiness and tenderness about 8 months ago. Prior to that I just had occasional itching where I have it more in the late afternoon evening time.
Permalink Reply by April on June 24, 2015 at 3:21pm
Hey Rachel,
So sorry you are dealing with this, but you are right, having the support of people who understand helps. I was diagnosed two years ago at 36, after I noticed a bald spot on the front of my hairline. It was right after I stopped nursing my daughter. I did xtrac laser treatment for a while, almost a year on and off. I think it helped somewhat but was not the cure I had hoped for. I don't do it anymore because getting to the appointments every week became cumbersome. I haven't gone the meds route at this point. After I was diagnosed I looked back at pictures and realized my hair loss actually started about 6 years ago. It has gone really slow for me up to this point but after my first pregnancy it got worse. I just had my second child 9 weeks ago and recently I've noticed the hairloss picking up again: ( the genetic component of this is definitely interesting. I'm convinced my aunt has FFA. She has no eyebrows or body hair. It's hard to see her hairline because she wears bangs, but her hair is very thin. I'm Puerto Rican, and mostly my family all have thick hair. I can really relate to what dragon&fox said about her hair being a trademark. My hair has its own zip code! Haha. So, kind of ironic that I am losing it. I am still able to cover my loss without anyone noticing but I fear the time when that is no longer possible. Overall, as time goes on it gets a bit easier to deal with this diagnosis. The initial shock of it is really hard. I still get sad about my hair, but I don't think about it constantly like I did at first. And, you can always vent to us or let us ml know if you find a treatment that is working! Take care, April

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