Comment

Comment by Jules UK on January 31, 2013 at 2:32pm

Hi all. The discussions lately have been so interesting. I'm trying the gluten free diet ( as of yesterday), also started taking turmeric and spirulina for its amino acids - good for hair growth apparently. I have an appt with a homeopath tomorrow so will feed back on her advice. I next see Dr Harries on 1st March, but I feel disillusioned with what I've tried so far, since the Protopic made things worse. My mum still has a good head of hair. There's no record of anyone else with hair problems in the family. I just hope I'm not setting a precedent......weekend approaching, have a good one everyone! X

Comment by Liz on January 30, 2013 at 2:47pm

Hi Rebecca. My mum has it too. She's had it for maybe 4 or 5 years and she's now 71 x

Comment by Robyn, Melb. Australia on January 28, 2013 at 7:13pm

Hi ladies,
Celia I agree, a grandchild is definitely a distraction from my FFA (and any other worries for that matter). I've had a lovely couple of days visiting the new family!
I would like to add to the steroid injection comments. When I was first diagnosed (2 yrs ago) my specialist said she would not do steriod injections for FFA as these were generally only successful with alopecia areata.
I doubt that my specialist is an expert by any means but I do respect her opinion as she has admitted this is a difficult disease to treat given that there is limited knowledge about it in the medical world. The use of Planquenil seems to be slowing it in my case - however we don't really know necessarily if that is how my situation would have progressed anyway as it was diagnosed very early. Hearing your comments it sounds like she might be right about not having the injections. Enjoy the gardening Celia - hope the weather improves I understand from relatives in Devon it's been quite awful! Very hot last week in Melbourne, but Queensland is now flooding again which is devastating for those people. Robyn

Comment by ElleMN, USA on January 28, 2013 at 10:52am

My next appointment with my dermatologist is Feb 12 and I'm contemplating stopping the steroid shots. I've looked online about potential side effects but was wondering what any of you have experienced, and what your thoughts are. It doesn't seem to be making a difference -- the hairline keeps moving back. Maybe it's slowing things down but I'm beginning to feel like it's just postponing the inevitable. I'd love to hear what you think!

Comment by Debs on January 27, 2013 at 4:16am

Hi Celia, I have 3 different brands of shampoo/conditioner for synthetic wigs. I am in no way an expert on this... I use the Jon Renau shampoo last time and their conditoner to stop static, I am happy with the result, I also have some Gisela Mayer that I have yet to try. I have purchased it from any online wig supplier - they all sell styling products. However, I have been advised by a wig salon that they use baby shampoo and fabric softener for all their wigs and it works just as well. The wig in my photo is Julia by Jon Renau, I bought it for a bit of fun from the wigtrendz website. Glad you had a fab holiday Robyn. I have only been skiing once and I am too much of a wimp to try it again.

Comment by Heidi Short UK on January 26, 2013 at 2:53pm

Hi everyone I haven't been on for a while I've just come back from a skiing holiday in Les Arc in France. It was lovely not thinking about my hair all the time, only when I took my hat off!. I had more important issues to worry about, like how am I going to get down this slope without taking out all the other skiers on the mountain! it's only the second time I've been but I really enjoy it but I wish I was better at it!
Well there has been lots of conversation, Celia I'm so sorry about your sister in law I'm sure she will be fine she sounds a strong lady.Congratulations to Robyn on your new granddaughter you must be so proud! Debs, I love your new photo I can't believe that you are wearing a wig, you give us all confidence that if the time comes when we have to wear one we can look that natural too!
I was told that dying my hair will not make any difference now as the damage is done below the skin, but I have dyed my hair since I was 18 as I had my fist grey hairs when I was 16!
I have had hayfever since I was 23 and over the past few years I have suffer throughout the year with inflamed nasal passages and in the last couple of years I suffer from really itchy salivary glands which swell and I look like a hamster after I eat certain foods! So yes I am definately one who suffers from allergies!

Comment by PamW San Diego, CA, USA on January 26, 2013 at 12:24pm

Hey, Debs. I love your new photo. You look great in that wig! So glamorous. I wonder how big a problem this is going to be before someone figures it out. People have had alopecia aerate for years and years, and doctors can't cure that either.

Comment by Debs on January 26, 2013 at 12:04pm

Pam I poised this question about hair dye on a UK based alopecia website and I had ladies tell me they had never used chemicals on their hair and had FFA. Like you I have dyed my hair regularly over the years. My derm has asked me not to as he believes that the chemicals women use on their hair in modern times may well be a trigger for FFA. I have not dyed my hair since I first saw him last July - it has not made any difference. Since I am wearing wigs now I am not going to dye it in the future and am using sulphate free shampoos to try to be gentle on my scalp.

Comment by PamW San Diego, CA, USA on January 26, 2013 at 10:56am

I trust my hairdresser. She knows my hair. I was told that dying your hair won't hurt you. the damage is being done deep down the hair follicle. I think dying plumps up the hair shift making your hair look thicker. My hair dresser does highlights and lowlights to create shadows which she says adds the look of volume.

Comment by PJ - MN, USA on January 26, 2013 at 9:38am

Sorry about your news Celia. Sounds like she's a very strong woman and a survivor, having gone through this before. Keep positive thoughts!!

I was wondering if there is anyone in this group that has never dyed their hair. I have for the past 20 years. I went to get my haircut yesterday and right away my hairdresser mentioned something was going on, she pointed out more hairloss on the side of my face on my hairline. So much for my Dr saying I looked better. Who do you go by - your Dr that is a hairloss specialist or the woman cutting your hair for the past 22 years every few weeks? My hairdresser is the one who encouraged me to keep looking for the correct diagnosis when I was first told I had Alpecia Aerta. She didn't believe it. She also feels I should stop dying my hair, but I am really gray for my age. Has anyone stopped dyeing their hair and noticed any improvements?

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