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Started by CurlyK. Last reply by kevinsstelly Jul 14. 32 Replies 14 Likes
CARF 2018 Conference Notes:First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.The CARF staff and volunteers are…Continue
Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies 0 Likes
Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue
Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies 0 Likes
Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue
Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies 4 Likes
Hello,Thought I’d share my experience, as one of the few men with FFA, in the hope that it will be useful to others. It’s possible that the condition progresses and responds differently in men. I’m 40, live in London and otherwise healthy.I first…Continue
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@illustr8r - Yes, I too have accepted my fate! I am done with obsessing over my hair and spending money and time over this stupid FFA. Apparently I am/was one of the ones that seemed to get every single side effect from the medications she prescribed in the beginning of my diagnosis when I was pretty much like, I'll take anything and do anything just so my hair won't disappear! But then after learning about the side effects and learning that even with the medications, FFA hair loss still creeps along- I decided there is no good reason to put my body through the awful side effects and potential long term side effects. Since then I tried a hair topper and an intralace system and gave up on both- I now have my hair in a cute spiky cut that hides the receding hair line and I have my powders and potions to also conceal the hair loss and so far it has all been working. When it stops, I have more or less decided that if my hair loss gets to the point that I need a wig I will shave my head and get a wig for those times that I want hair and otherwise, bald is beautiful baby!
Anyway, everyone deals with this disease differently, even every person here on this forum is dealing with this disease differently and there is no right or wrong way to cope with this. I do know that being here has helped me cope with it waaaaaaaay better then if I was on my own and I thank you all for that.
I've learned yesterday that my sunblocker contains titanium dioxide (TiO2), I used it the last summer abbundantly. Titanium dioxide is been frequently linked to FFA so if you use sunblockers be sure to check the ingredients with the manufacturer first.
@Minter I had a conversation with my family dr on Wed. about the no meds/meds conflict. She supports my decision because of the side effects that are complicated by my kidney problems. She is happy to know that the reason for the hair loss has finally been found. She admitted hair loss and what causes and cures it can be a frustrating mystery when it goes beyond low iron or thyroid problems. Anyway, I’ve accepted my fate. I spend my days hoping my hair loss remains stable and I look at wigs now and again.
Thank you, Minter. I totally understand not wanting to take medications. I have to have blood drawn every two months for the medication I am on. I don't know how much longer I will continue with my meds.
ammie, that is great news- stable & inactive is always good!
I saw my own dermatologist several weeks ago and she switched my appointments to once a year also, combining the hair check with the yearly skin check. I think she doesn't know what else to do with me since I refuse to take the medications she wants to prescribe :-/
I had a good check up with my dermatologist this week. She agreed that my hair loss seems stable. She seems to think my hair has even filled in a little but I don't really notice that. To me it looks the same. She switched my appointments to once a year instead of every six months. All in all I was pretty satisfied with the visit and hope this unpredictable disease remains inactive.
Thank you @akb, I will try it also; I've lost almost all eyebrows but it's worth trying to keep what remains.
Pascal, Elidel helped with mine! They were only starting to thin (and I had a bit of a hole in one of them), but I think the Elidel arrested the loss and filled in some missing parts. They're definitely not as big as they were before, but I am hopeful that maybe they will be with time.
Please I need advice about Protopic ointment; do I apply it only on eyebrows and the outer hairline, or to the entire scalp? Do I wash it off after some time or I have to leave it on?
About Elidel cream, does it really help to regrow eyebrows?
Thx again pauliegirl, I would be interested in any new info you might have on either disease,...would be appreciated. I'm glad that your ffa symptons seem stable, whether from AIP diet or otherwise. I have seen many others here who have tried it without much benefit, so who knows, maybe it's coincidence or maybe it is beneficial to some & not others....I agree that there is quite possibly a connection between some conditions,espec autoimmune & gut health. I have always eaten really healthily & exercised much of my life (nearly 60)....so I think there is also most likely genetic & hormonal connections involved....A strange observation....I always used to prefer the warmer weather to the cold & Graham vice versa....now I have a disorder (lpp/ffa)that is aggravated by hot humid sweaty climate (discomfort with scalp itching tenderness etc)& Graham's scleroderma, partic the
Raynauds syndrome is aggravated by the cold. Also what is it with many of the Doctors/Specialists who are misdiagnosing or dismissing our suspicions of the disease we feel we have after many of us have come to the conclusion from endless research; even when we had never heard of the condition prior to our symptons. There are many intelligent women on this forum who appear to have the same story....diag themselves correctly before biopsy from researching....way ahead of the often slip slop guessing by Doctors &/or their lazy cop-out remarks like "oh, its age related, most women have some hairloss in peri or post menopause" bla bla & so on......just as it seems you figured your scleroderma diag way before it was confirmed....but we rely so much on the researchers to find a CURE for many of these rarer conditions....hopefully they have the answers well before our children reach our age!!
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