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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
Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply 0 Likes
Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue
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There is a support group in San Diego that I am thinking of attending; I think it's so true that being around others who are experiencing the same thing is healing. I so appreciate this forum, even though I post rarely; but I also look forward to being in the company of women who have walked this journey.
Oh and Celia, you are right, if it was the doctor's wife or mother being affected they would much more concerned about it and looking for treatments. I've heard there is an Alopecia support group in Omaha, Ne which is near me but I haven't gone to a meeting. I should look more into it.
Hi everyone! Celia your eyebrows will calm down in a few days, I love mine, I feel more complete with them, just make sure you keep them from drying out for the first week, as if they scab up too much it will lift the pigment too.
Liz have you thought of jumping the que to see a private dermotologist. When I was first realised I had a problem and it wasn't going away my GP did lots of blood test but nothing was found, he then suggested I saw a derm I was sobbing so much I think he was embarassed!! I was in such a state I asked if I could go privately, he wrote a letter straight away and then I rang my local Nuffeild private hospital and I got an appointment 2 weeks later. It cost £150.00 for my first consultation and £90 for a follow up about 6 weeks later. Once I realised that there was not much else he could do and so I didn't have to pay any more I asked my GP to put me under the NHS derm, thats who I am with now. I know it is a lot of money but I rather that than waiting around getting more and more depressed and ancious, it was a small price to pay for peace of mind!
Celia, so happy for you that Eyebrow Day went well. It would probably take some getting used to it, but easier for you in the long run. Have a great evening!
Liz and Debs, I agree also about the doctors not being very understanding of this condition. When I was diagnosed in March 2012, my Derm had done a biopsy and then told me it was FFA. He told me there were some drugs being used but he didn't recommend them because of side effects. And that was it. He said some women lose the whole front half of their hair and it would continue till it just stops. He seemed somewhat sympathetic, but didn't offer any other treatment, counseling or support. He had seen only a few other women in my town with this condition. I held my emotions together until I left, but I was too much in shock to think of asking any other questions. I've thought of going to another dermatologist, but I'm sure it will be the same, and my insurance wasn't covering the diagnosis and it was very expensive to keep going. I'm not sure if my insurance would cover a wig, probably would for someone with hair loss from cancer treatment, but I don't know about alopecia. So I'm just hoping to hold on to the hair I have left and try to cover the rest.
Liz, I agree with you completely. In fact I wrote a letter of complaint to my GP a couple of weeks ago. When he told me last December that I had alopecia he was very brusque and it put me in a complete tail-spin that I am only now coming out of. He ruled out any drugs and just left me to get on with it. I have received a letter from the surgery saying in future he will give out some self help info for people with hair loss: I told him the website address of this site and a few others. This is a common theme that GPs don't show any understanding for alopecia. I have told my surgery I refuse to be treated by this GP any more. I have an appointment on Monday morning to ask for a referal to Dr Harries and to ask about my 2 NHS wigs I can get free. I am sure they will be terrible quality but I can use them for on the beach or whatever... XXX
You know what I'd like, apart from offers of medication I'd like the doctors to offer advice and nuturing. I'd like them to be interested, to spend time with us when we see them, and to feel that they take us seriously and really care. If, which it appears is the case, they dont know much about the condition, there are better ways of being told. It's possible to give bad news but in a nicer more helpful way...Anyway, thank you all for making this crazy condition more bearable. I'm prepared to go balder in your lovely company :o)
The drug HYDROXYCHLOROQUINE SULPHATE 200mg twice a day is being used to treat other types of scarring alopeica - I have just got this info off another alopeica support website. This anti-malarial drug has been mentioned now by several ladies in this group and I am seeing it talked about on 2 other alopecia users websites. Dr Harries has talked to Celia about this drug also.
Jules - no, I don't wear a wig at the moment... I am starting to wear them out socially and will go into them at work in the New Year because my hair looks messy. I will get to my GP and sort out an appointment with Dr Harries. Liz, it really is ridiculous how long we have to wait for appointments with this condition. I waited from March to July to get my 1st consulation with a derm. I had a really lovely experience last night with the ladies at the Alopecia UK support group. One lady has FFA... I could not believe it. It definately is not as rare as these doctors are trying to make out. She was wearing a custom made hair system, it was completely undetectable and totally blends in with her own hair. It just covered the front part of her hairline and she gets that done in Bond Street, London. www.greatlookinghairlondon.com Simon - 07949 207848 if anyone in the UK wants to give it a go. I can thoroughly recommend going to a support group. It was a relief to meet people that have experienced hair loss. Everyone was very friendly. I will definately go back.
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