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random thoughts
Well our stories are all so similar I could almost interchange mine for any of yours. Eyebrow loss, odd scalp sensations, skin issues, progressive hairline loss etc., the hunt for the diagnosis, the horror at finally getting it. I know the fear, the sadness, the obsession with hairlines. I have been on multiple drugs as have all of you. It's going on 5 years since this all started ( at least that I noticed) and while I have stretches of time when it seems to have slowed, it still marches on.
A tip for the summer if your brows are thinning or gone: I found a product called Wunderbrow , online, about $20.00. It's a gel with some fibers in it so it creates a decent brow. It doesn't come off while swimming, that's the best part. However, I do want to try microblading as my brows are gone. Anyone know of a good place to have this done in the greater eastern Pennsylvania region?
And finally, I have three questions/points:
1. Why do docs continue to prescribe and inject drug after drug when we all know they don't work and there is no cure or surefire treatment? Why do we risk our money, our eyes and kidneys and skin for something we know doesn't work? Our hopes our dashed further with each failed dug. Money is gone and the hair loss continues. It seems unethical to me.
2. If the vast majority of women who have this are post menopausal, doesn't it seem logical that their is a hormonal dimension to this?
3. Is there anyone out there that does NOT or has NOT EVER colored or dyed their hair? I have done it for so long, I can't help but think this might be related, especially considering it could be an autoimmune disorder.
Ok thanks for your time. Keep posting, venting, joking, and supporting each other. Do whatever it takes to get thru this, and yes, including putting up with the dummies that say 'well just be grateful it's not cancer'. You are all amazing, brave, kind and a great help to me especially on the bad days.
~Beez
Replies to This Discussion
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Permalink Reply by pauliegirl on
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Cara, Feeling for you as I understand everything you are saying. I am not sure if you have seen my posts re sunscreen. Please check to see if any products you've been using, especially on your face and hands, contains sunscreen. If so, is it chemical? (Vs physical). I am becoming quite certain that some of us in the world have a propensity toward autoimmune, and when coupled with prolonged use of chemical sunscreen, get this stupid f'ing (yes!!) FFA. I call it FFFA!;) If you are using a product with chemical sunscreen, please stop. My symptoms of inflammation have virtually disappeared since stopping my facial product containing chemical SPF a week ago!!!!
Was diagnosed the same way as you. Also knew it before biopsy came back.
XO!! -
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Thanks for your post! Thoughts:
FYI have colored hair for 20 years :/
FYI Perimenousal
Last, there is a woman in my hair loss support group who has both breast cancer AND FFA and she says the FFA is worse! Wild but, so there to those who can't empathize with the devastation FFA causes!!Best~
Jamie
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I agree with most of your comments, but I have NEVER coloured my hair so that's not it for me.
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I just wanted to update in case anyone is considering microblading. I had mine done in early July.
It has been quite a journey. I did a lot of research and read a lot of reviews (my girls did too) before I decided who to go to. It is SO important to go to the right person because they are literally tattooing across your entire face. She spent a lot of time drawing them in first but I wish I would have brought in more pictures. I've seen some examples that look pretty severe and I wanted mine to look as natural as possible. You can always go in for a touch up later so baby steps were the right way to go for me.
I had lost most of my eyebrows so it was pretty shocking to see them at first because they are very dark to begin with. It took about 2 weeks before I felt ok not wearing sun glasses because they scab and fade over time. Now it's been almost 6 weeks and I'm so happy I did it. I just got back from a 3 week trip with my family and I didn't have to draw my eyebrows in everyday which was such a gift!
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Permalink Reply by Mattsmate on
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I also had mine done in early July. My experience was great as well. I have an appointment at the end of the month to touch up...there are a couple of things for her to fix and I'd like them a bit darker. It is awesome not filling in my brows every day!!
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Hi Beez,
Mine all started after getting Brazilian Blowout treatments. I agree that FFA can have many triggers and has a hormonal component. The blowouts contained large amounts of formaldehyde that forever changed my hormones and aged me by decades. I too go back and forth questioning wether to throw in the towel and accept my fate, feeling there is no hope or wether to keep fighting, researching for a possible cure and continuing the fight. Nothing I have tried has worked so far and slowly, but surely my hair line continues to recede. It's like a band of hair loss from the front all the way along the top of my ears, and around the back to the nape of my neck. So, so strange. I definelty wouldn't wish this on anyone. -
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Permalink Reply by Terri on
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Dear Beez,
When I was first diagnosed with FFA, my dermatologist went over the list of medications that I was taking. When he saw I was taking Microzide (Hydrochlorothiazide) he immediately told me that medication is known to cause FFA. My dermatologist said he had diagnosed 2 other women with FFA within the same month that were also taking Hydrochlorothiazide.
I was heartbroken because this side effect was not listed on the package insert. I took this medication for almost a year before I was diagnosed.
If this medication can cause FFA, there is something this medication is doing internally to our bodies that is affecting our skin and hair.
My dermatologist said there are a few research studies on this drug and why it can cause FFA. He said most physicians are not aware that Microzide (Hydrochlorothiazide) can cause FFA.
Not long after I was diagnosed with FFA, my internal medicine physician ran blood tests and found I also had hypothyroidism. She prescribed Synthroid (Levothyroxine) once a day. After taking Levothyroxine for 6 months, my eyebrows and eyelashes started to grow back. Unfortunately, my FFA has not improved.
I'm concerned that Microzide (Hydrochlorothiazide) may have affected my thyroid gland.
I agree that FFA may be caused by a problem with our endocrine system.
I find it sad that drug companies spend millions of dollars researching hair loss in men, but do not seem to research hair loss in women.
I believe there must be many women around the world with alopecia that are living in silence.
We need a way to bring this disorder to the attention of the rest of the world.
Sincerely,
Terri
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Permalink Reply by Susiewoo on
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Iv had ffa for 18months now, i have coloured my hair since my early 30's and i have never really used spf as i live in the uk. I am 47 and still have regular periods and my hormone levels are fine. I feel like this disease is taking over my life! Im constantly checking mt hairline and dread washing my hair as i literally count the hairs that come out! I still have some eyebrow hair but did get them microblsded which i would definately recommend. The hair by my ears has completely gone and this is what really bothers me. I have searched for false sideburns (bangs) and have found a company in Bristol UK called hair4all, they have an instagram page. I am going for a consultation soon and hopefully this will give me my lost fringe and sideburns back. I will post again once i have been and let you all know how it goes. Sending lots of love to all my fellow ffa sufferers xxxx
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