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Comment by Liz on February 24, 2013 at 5:37am

Morning :o) I've decided to buy a wig sometime soon. When I looked last time I was told that they fit more securely on a bald head but I don't want to shave my hair off. Has anyone who has a full head wig and has hair, had any problems with it staying in place? xx

Comment by Simone NJ USA on February 23, 2013 at 6:34pm

Bless your heart, Kath...thanks again and I'm sorry for the loss of your friends. Yes...several have shared their experiences with Plaquenil..I'm grateful for that..I will continue to take this to prayer and see where it leads me...thanks again...

Comment by Kath UK on February 23, 2013 at 4:55pm

If you're new to this, Simone, then I really sympathise. It is a shock, I know. But doctors are bound to come up with better and better treatments and I think you seem to be doing all the right things like healthy diet, exercise and lowering stress levels. I'm sure that helps - especially avoiding stress. And apparently FFA can stop at any moment. I can empathise about being scared to start the Planquenil - maybe one of the others in this group could tell you how they've got on with Planquenil.
It is confusing, I agree. All I can say is that I think being in a group like this can help - just knowing that you aren't the only one with this problem is comforting, I've found.

Comment by Susanne on February 23, 2013 at 4:54pm

Hi Donna and Kath - it's good to hear your thoughts and stories. Donna, yours makes me a bit more optimistic about taking a gluten-free approach. I'm glad you joined the group. Kath, it's always good to read something which puts this whole thing in perspective. I'm so sorry for the loss of your friends.

Comment by Simone NJ USA on February 23, 2013 at 4:35pm

Thanks Kath for sharing your thoughts. I've still new to this all. Having it for at 1 1/2 years or so I think and just recently diagnosed with FFA. The progression for me has increased in the past 2 1/2 months. However, I haven't had any activity in the past 2 weeks. It's been hard for me to accept especially since I still have not used the prescription of Planquenil as yet. Just simply too scared to do it. I'm just on a healthier diet, exercise, trying not to stress as much and see where the hair loss will stop...still confused with everything...

Comment by Kath UK on February 23, 2013 at 4:10pm

Hi Simone. Nice to hear from you! To answer your questions - no I don't wear a wig though I am now considering some sort of hairpiece - maybe a sort of fringe type thing. I don't know where I would go to get one here in Edinburgh but I intend to have a look online. I've lost almost all my eyebrows now so I use a semi permanent eyebrow pencil. I lost all the hair on my arms and legs first off (at the time I was quite pleased because I thought it'd be great not to have to shave any more!).
As to losing your mind..... maybe it's a bit easier for me because I am not a young woman. If I was in my 30's I'd be truly devastated and I am very sympathetic towards younger women (and men) who have alopecia. I've found that being older makes it easier for me to be philosophical. Also I have a very supportive husband and family and friends too. That helps a lot.
I've lost four good women friends to cancer in the last six years. Each one went through chemo and lost their hair and they had to deal with suffering from cancer too. Seeing that, kind of put things in perspective for me a bit.
I do still get a bit depressed of course! I wear hairbands a lot and hats too (I HATE windy days). I've probably got the biggest collection of hairbands in Scotland......
I guess I cope because I haven't much choice!

Comment by Simone NJ USA on February 23, 2013 at 2:58pm

Hi Kath:

I wanted to ask since you have had it for 10 years..are you wearing a wig? How much have your eyebrows been affected though out the years? I so amazed that someone can be dealing with this thing for so long. I think I would have lost my mind by then...how do you cope with it?

Comment by Donna on February 23, 2013 at 2:57pm

Hi. I am Donna from Canada and I just joined the FFA group after becoming engrossed in all your posts. I have not been diagnosed by biopsy but I am sure I have FFA. I lost my eyebrows around 2006 and got a tattoo and like it much better than looking un the mirror and noticing I had wiped one pencilled brow off at some point. I did not notice the hairline for awhile and look back in pictures to try and determine when it started. I noticed about 3 years ago but it had probably being progressing for years by then. I had a naturally high forehead already. I have now lost at least 1.5 inches and changed my hairstyle to try and cover. If every hair is in place it is not too noticeable but on a windy day my grandson looked at me with horror and said " Grandma, you are bald!" I went to an MD of functional medicine out of country almost two years ago with my main issue being digestive problems (constant diarrhea).
Other issues - hair loss, dry mouth with dry cough, eyes don't tear. I was told that all my issues were autoimmune triggered by gluten and stress. I have been on a strict gluten free diet for 21 months with a few accidents. My digestive issues and dry mouth and cough are non-existent most of the time. I was also told that the only hope was to stop the progression of FFA not regrowth. I measured how far back my thinning hairline was a year ago and there has been little if any change. I am not taking any prescriptions but am taking supplements specifically for hair health on top of the handful of supplements I have taken for years. So, in my case I believe stress, gluten and genetics all played a role. My sister and cousin also have FFA. I don't feel that this means gluten plays a role for everyone with FFA but was most interested in the discussions in this regard and was compelled to share my story.

Comment by Kath UK on February 23, 2013 at 1:42pm

Thank you so much, Debs, for posting the report of your visit to Dr. Harries. I'd read about him some time ago but had never seen a report from anyone who had actually had an appointment with him. I might ask if my dermatologist would refer me as I could fly down to Manchester from Scotland but I've already lost about 5 cm from my hairline and it is still progressing. I've had FFA for about 10 years so it is a slow moving thing. All I've ever used is Dermovate.

Comment by Susanne on February 23, 2013 at 12:01pm

Thank you, Debs, for taking to the time to report on your visit. I do find it astonishing that there is no one in London who deals with this at all, but I'm glad you found a good doctor who cares and is doing his best to treat women. Of course, there is no evidence that a gluten-free diet will help FFA, but there's also no evidence that it doesn't. There have not been any studies done, nor will there be anytime soon. No one knows much about this condition. My aim is to try to get at what is causing my body to have an autoimmune response and to cut off any other possible autoimmune illnesses. There is plenty of evidence that gluten sensitivity is related to autoimmune conditions.

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