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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 Airam-FFA on
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Hi Béez
I have coloured my hair since a teenager. I am not sure if this has had any effect in FFA - as why would we just (initially)lose hair along the hair line and not all over our heads?
I wonder if sun creams are a more likely cause, as I have lost hair from all over my body where suntan lotion is spread. Thus, not my scalp for the time being. But 2/3 cm loss along my hairline from in front of ears and fringe area.
I agree with what you say about the drugs etc. Better to have hair loss rather than loss of sight or any of the other contra indicators. (Although, I am anticipating developing other auto immune conditions in due course.)
Would love to know when burn out is likely to occur :)
Best wishes
oXo -
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The reason I mention hair dyes is that if we constantly assault our hair follicles with chemicals maybe the body doesn't 'recognize' it anymore, hence the auto immune attack. Then every hair follicle can conceivably be reacting the same way. It's the same concept with sunscreen. I have lost body hair as well, including places I have not used sunscreen or hair dye. Just a thought.
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I think it is probably a combination of factors which is probably different for different people - but all has the same end result - autoimmune issues that affect the hair follicules.
It is a shitty condition whatever the cause.
oXo -
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Permalink Reply by Sequingirl on
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But why the pattern of hair loss re: hair dye?
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Permalink Reply by Mattsmate on
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I have only colored my hair a handful of times but I have been using chemical
Relaxers/straighteners (like Brazilian blowout) for the last 20 years. -
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Permalink Reply by Isabel on
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Hi!
replying to your third question, I have an uncle, who has passed away in 2014, who had FFA and never colored or dyed his hair.
He also never used sunscreen, so I think that is also not a factor.
I hope someday someone finds out exactly what is happening and how to solve it!!! In the meantime, let's all hang in there and keep supporting each other.
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First, I am sorry for your loss of your uncle. My understanding is that it's extrmemly rare in men. Did he get diagnosed by a biopsy?
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Thanks!
No he wasn't biopsied - he actually lived only for half a year after my own diagnosis.
When I was diagnosed, the doctor who told me what I had was extremely enlightening. He showed me plenty of photos of the condition, and I recognized the hair-loss pattern in my uncle.
Later, I did a collection of photos of the last 40 years of my uncle's life to document the hair loss progression and sent them to dr. Christos Tziotzios and he concurred with the diagnose.
I also believe that it is much rarer in men, but I think it is probably underdiagnosed, as men and society in general tend to face male hair loss more naturally.
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Hi Isabel, I saw Dr C Tziotzios when I was part of a research (only filled in forms, had my blood taken and a short discussion with him). I thought he was lovely and hoped to see him again as he was is informative and agreed that I had LP (it came up in my biopsy but was dismissed by the dermatologist on clinical examination). When I went for an appointment I saw his colleague and I was only offered steroid shampoo and lotion. I am beside myself about this condition as it is now affecting my eyebrows, eyelashes and nails. Do you see Dr Tziotzios?
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Hi Vicki
I also took part in dr. Tziotzios' study - I went to the UK in late March 2016 and did indeed see him. I told him about my mother and later sent him blood samples and photos of her.
I am looking forward to the conclusions of his study!
Vicki, I have found, in my case, that sea water is helpful in relieving inflammation on my eyelids and scalp (I am lucky in that I live in a coastal city). If you can, maybe you could try it. If you don't live by the sea, perhaps a solution with water and sea salt can help. -
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Hi Isabel, I look forward to receiving the conclusions to his study too. I might email him and find out what is happening. Thank you for sea salt water solution tip, I will give it a try. If you have any other tips please let me know. I also have ridged nails, and my skin is raging quite rapidly over the last 14 months - do you have this? Warmest regards Vicki
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Hi Vicki - I don't have ridged nails, no, but am not sure what you mean by "skin raging quite rapidly" - English is not my first language, and I don't know the expression
On further tips, I've tried pure Aloe Vera gel and it works nicely for calming my scalp and skin - I bought it here in Portugal, but the company that makes it is from the UK - optimah.com
Best wishes -
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