Comment

Comment by Jen on January 25, 2014 at 7:27pm

Hi Pam,

You share my thoughts on accepting FFA. I do not need a hairpiece just now but I will need one soon. I would like to know (if you do not mind) what type of hair piece you wear that is suitable for FFA and how you attach it.

Enjoy your holiday to Asia. 

Comment by Kath UK on January 25, 2014 at 5:34am

Good for you, Pam!  Well done. 

The only way I've found to cope with FFA is to do just what you're doing and basically get on with life.  I'm off the drugs too and am concentrating on being as healthy in mind and body as I can and feel thankful it's nothing worse!  The doctors are bound to find a cure eventually but in the meantime I'm determined not to let the loss of my hair interfere with my life. 

Your planned cycling holiday sounds amazing.   

Comment by Celia on January 25, 2014 at 3:59am

Sounds good, Pam - well done ! And great to hear of success stories from those of you on rogaine - all good news !

Comment by Pam on January 25, 2014 at 3:56am

I think that I have been through a terrible stage having to accept that I have got noticeable FFA, and learning to cope with the consequences of how I look, and how it affects my life style and freedom.

 It is almost like a process of mourning -  for my lost appearance, for limiting my freedom to feel OK about swimming, snorkelling, riding, cycling and having lovely hair, which I used to have!

I have had to come to terms with it, move on, and accept that this is something that I have got to deal with, and it could be far worse after all! I need to get it into proportion compared to other things that can hit you in life.This site has helped me enormously by sharing my feelings with other people going throught the whole thing.

I have become somewhat sceptical about all the various drugs that I have been offered, as I honestly don`t think that the medics are really sure, and we can give them a go, but nothing is definitely going to work.

 So at the moment I have decided to be positive, and try and feel better about myself. I have got a hairpiece fitted which makes me look a lot better, and I have cut down the drugs, and am currently just taking fishoil and organic turmeric, and trying to follow a healthy life style and be happy in myself, and not dwell too much on what is wrong! (Am just about to book a lovely cycling holiday in Asia!!)

Comment by MJ on January 24, 2014 at 5:43pm

Annie, my derm said the same about the rogaine. It keeps the follicles stimulated. My eyebrows had thinned but not sure if it was from ffa or menapause. Of course that was until this past Sunday when a freak flame ball shot out of my oven broiler right to my face. My hair got singed aa well as one eyebrow and some eyelashes. It was just a flash fortunately and my hair didnt catch on fire. But it was the last thing a person with ffa would need! My little brow nubs seem to have grown a smidge since then.

Comment by Annie on January 24, 2014 at 4:26pm

C, I've been using Rogaine on my eyebrows since my diagnosis 10 months ago, and they are yet to be affected by ffa.  My doctor said he thinks the Rogaine keeps the surrounding hairs poking through and makes it more difficult for the follicles to scar over. 

Comment by MJ on January 24, 2014 at 3:28pm

It is good to hear all the different perspectives and approaches. I hope we will continue to hear from those who may have reached the point of burnout...would be good to know there is a light at the end of the tunnel! I definitely agree that a healthy lifestyle can make a big difference. I am following an anti inflammatory diet and staying active. In doing so, i feel so much healthier in mind and body and that helps with coping with ffa. MJ

Comment by ElleMN, USA on January 24, 2014 at 2:48pm

I hear the frustration with the meds and I just wanted to share my experience since stopping all the meds last March. I'm finally to the point where I'm not getting handfuls of hair dropping daily; this probably stopped last October.

Things I do:
1. wash my hair with tea tree oil shampoo with no conditioner (I thought this would be problematic but it's fine--snarls are still easy to get out). I also use Dr. Bonner's tea tree oil soap for my body.
2. I take fish oil with vitamin D every day
3. I'm getting 9-10 hours of sleep each night. This is a huge change from being woken up numerous times each night by my now 6-year old.
4. We got a puppy in October so I'm getting much more walking and outside time (exercise+vitamin D)

My scalp is much healthier; I don't get so flaky or itchy. I'm not sure what specifically is working or if maybe the FFA is burning out. Just thought I'd share.

Comment by Maddy, California, U.S. on January 24, 2014 at 2:09pm

MJ - I use Latisse on my eyebrows. I started using it almost immediately (probably 4 years ago) when I noticed they were getting thinner and, so far, I still have decent eyebrows. I use the Rogaine on my hairline at night only. I wash my hair every other day, but sometimes I will just wash the front (bangs) in the sink on the off days if I feel the Rogaine made my hair look greasy overnight. This seems to work for me, but I'm sure everyone is different. 

Comment by Celia on January 24, 2014 at 1:56pm

Annie - your comments and other recent ones from many of you would indicate that the meds, any combinations do not appear to have positive, across the board results.  Yet your feeling is that pain/redness is improved and you attribute those improvements to the use of meds.

MJ - using a q tip and applying rogaine to the eyebrows - I would suggest is probably a waste of time.  This disease appears to affect the eyebrows most noticeably first.  Then I seems to continue the attack into the hairline.

My feeling is that we should all continue to adopt a healthy lifestyle embracing a good diet regime, cutting down on sugary foods, exercising daily to raise the heart rate as much as possible depending on individual fitness levels.

I am soon to see a new dermatologist locally.  I am certain that the prognosis will be the same as in the past, and the treatment options will not be any different to those suggested before. Best wishes to all.

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