Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 601
Latest Activity: Jul 8, 2023

Discussion Forum

Botox and FFA

Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies

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

Tags: Botox, FFA

Trying a new approach with CBD oil...

Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies

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

Man with FFA. New member.

Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies

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

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by tcasal Nov 2, 2022. 1 Reply

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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Comment by Debs on June 19, 2013 at 5:41am

Jules, I think the research needs to be in finding out the cause of FFA - once they know the cause we can avoid that and the medical professionals can find a cure. I think the cause is something environmental because FFA did not happen historically so there is something in late 20thC and early 21stC living that is affecting us. Insecticides, hormones fed to cows to increase milk yield, sulphates in shampoos have all been mentioned by medics as possible triggers but I think the research needs to really nail the root cause first. XXX

Comment by Heidi Short UK on June 18, 2013 at 6:19pm

but your friends and family are the most important to you and they are still there for you.Just think if you had a friend who had ffa would your feelings change for them just because they have less hair! x

Comment by Heidi Short UK on June 18, 2013 at 6:13pm

Christie I agree with you, I do keep busy so I'm not dwelling on my hair, I also excercise quite a bit, for 2 reasons really, I'm a cook and I love food so I eat too much,and since I started the menopause 6 years ago it made me feel better so I go at least 3 times a week. I also try not to get too stressed, so I arrange my life quite methodically, which annoys my husband as I'm not good at spontanous, but it keeps me on a level path!
I know I am feeling alot calmer now dealing with my hair loss than i was last year but we have all been through that panic stage of the unknown, how soon will it go, how far back is it going to recede, what am I going to look like, the list is endless. But I found, once I realised it wasn't all going to go quickly, I'm taking everything I can to slow the process and after 18months you still really can't tell I've got a problem, except on windy days,then slowly your life gets back to normaland its not the first thing you think of when you wake up! So hang in there I know its not great but

Comment by Jules UK on June 18, 2013 at 2:22pm
There's been such good advice here. I do agree with you, Christie. I do yoga which helps with relaxation, and am still doing the 5:2 fasting diet that's supposed to shock the body into repair mode. Plus it helps keep my weight stable. Maddy, I tried to go gluten free and felt awful - dreadfully tired and light-headed. Maybe that's the problem?
Pam, I use Couvre above my ears. I've still got hair above that covers the baldness, except when the wind blows! It stays on well all day.
I've emailed Dr Harries about the steering group he mentioned at my last appt. No reply yet but he was on holiday until Monday. One thing he wanted to know was what areas of research we'd like funding to be directed at. Apart from 'make it stop!!' Of course...
Comment by christiekd on June 18, 2013 at 12:28pm

I find that the best way to cope with this disease is to do three things (in addition to the medications, of course): focus on the blessing in life rather than what this disease is taking away from me, try not to stress too much about the little day to day things that come up and exercise as much as possible. I have found that my hair loss began and increases during times of stress. So I try to take things with a grain of salt and enjoy all that is going on around me. I have to tell you that this is a switch from my normal personality. I am very type A and giving that up has not been easy. And some days I fall back into my old ways. It is my opinion that I actually benefit more from positive thinking than the medications I am taking. However, it is my hope that a combination of both is the best course of action.

I also never give up hope that this disease will stop progressing sooner rather than later. My hairline has changed drastically, but I am still at a point where it is manageable. So, I am doing everything my doctor is telling me to do in terms of medication while continuing to think positively about my situation.

Finally, another gift I give myself is exercise. I think that exercise is the single most thing that causes our body to function better as a whole. Plus it really helps me to live a more stress free life.

I hope this helps others. It has taken me 3 years to get to this point, and it does seem to be working for me as I am back to being in a little remission. My eyebrows have filled in a bit as well in the past few months.

Thank you all for being here too. I don't know anyone else with this disease, and it has helped a bunch knowing you are out there and going through the same thing.

Comment by PamW San Diego, CA, USA on June 18, 2013 at 11:10am
Maddy, I just sent you a friend request so that I can privately message you with my personal email. I think that once you have a cosmetic solution that you can embrace you will feel so much better. You should go on your vacation and have the time of your life. Hang on for Dr. Goh and cross bridges when you get there. About gluten - this disease is not an allergy to gluten. However, gluten does cause inflammation in our bodies and we want to cut down on inflammation. Stress is also a cause for inflammation. Try to distract yourself so that you are not thinking about your hair.
Comment by Maddy, California, U.S. on June 18, 2013 at 10:06am

In reply to Pam W., I go to see Dr. Goh this Thursday morning. I hope she will have some ideas for me. These new symptoms of fatigue and light-headedness just sort of crept up in the last 10 days or so. I have changed my diet...started wondering if I was allergic to gluten...so maybe I'm not eating enough, or maybe it is depression, I don't know. I see my therapist this afternoon and yesterday I went and had a bunch of blood work done, but won't have the results for a couple of days (I do see an endocrinologist every year to check for thyroid and other issues, but in the past everything has come back normal). Anyway, the whole thing is pretty stressful, especially trying to come up with enough energy to go go work every day and juggle all these doctor appts.

I am also thinking about buying a front hair piece, just in case this continues to get worse. I went to see a lady last week who makes pieces for people with cancer and alopecia with real hair. She custom makes them. It was a good, but weird experience...one that I never imagined I'd ever have.

I feel so depressing all the time. I have a big trip coming up in a couple of weeks, one I have been looking forward to for many years, and now I can't seem to even get excited about it with all this hair stuff going on.

Anyway, thank you all for listening. Maddy

Comment by Rita - Canada on June 18, 2013 at 9:33am

In reply to Pam, I use Topik and another called Illusion which are tiny fibers that help to camouflage the thinned out areas of hair. Comes in a few color shades. However, since I wear bangs, I don't sprinkle it on directly at the front but it works for me where you part your hair.

Comment by Celia on June 18, 2013 at 5:09am

Welcome Pam - sorry you have this awful FFA too. I can recommend eyebrow tattoos - they make such a difference ! x

Comment by Debs on June 18, 2013 at 3:17am

PamW, yes it is a huge relief to have now been wearing wigs to work for 6 months and for it to be something I have incorporated into my daily regime. I don't wear wigs all the time. I use buffs mostly when I am not working and sometimes a scarf tied round my front hairline like a headband. I do of course want the hairloss to stop because the more hair I have the easier it is to just use buffs etc.. when I can get away with a casual look.

Pam (in the UK) you can get top hair pieces (toppers) from online wig stores int e UK but I would go to a wig salon and try a few on just in case you don't like the way you have to attach them; clips, glue, tape. I depends how much money you want to spend as to what top hair piece you go for. If you friend me on this site I can give you more details. XXX

 

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