Comment

Comment by Susanne on February 1, 2013 at 8:40am

Good luck, Debs! Rebecca, I would be curious to know what your dermatologist thinks FFA is, if it's not an autoimmune disease. Why would our immune systems be attacking perfectly healthy hair follicles? I do agree that we don't know if the gluten-free thing works and I'm not far enough into it to be able to tell. I can tell that I'm less depressed and my skin has pretty much cleared up completely. So there's something to it. As far as FFA goes, time will tell. In any case, here's wishing all of you ladies on this post strength and courage. Have a great weekend.

Comment by Jules UK on February 1, 2013 at 4:20am

Yes, good luck, Debs! It's a major step but from your photo, if anyone comments, it's going to be complimentary. X

Comment by Debs on February 1, 2013 at 1:01am

Hi Celia, I see Dr Harries on 22 Feb. I will ask him about gluten free diets... I am going to work today, wearing a wig for the first time at work, I feel physically sick at the thought of people looking at me. Going out socially with my friends/family is fine as they are all on my side if you know what I mean but work colleagues can be different. Oh well... off I go to face the music. XXXX

Comment by KarenGinny - Iowa, US on January 31, 2013 at 8:09pm

I'm finding this interesting regarding trying a gluten free diet to ease our symptoms. Since I have a son who is autistic, I've read alot about some people going on a gluten-free,casein-free diet to improve symptoms of autism. It sounds like some people are genuinely allergic to gluten- "celiac disease", while others are bothered to a lesser degree. We tried the diet with our son some years back but it was difficult since he was so picky. It was hard to find substitutes for things he liked. But now it seems like it's become more popular and there are more products out there to take the place of gluten. Most stores have a health-food section with gluten free products. Of course mostly a person just needs to eat healthier, fresh fruit and veggies, low fat dairy and protein, etc. I found this link interesting - Anti-Inflammatory Diet (Sjogren's Syndrome Foundation) I should probably try to do this.

Comment by Liz on January 31, 2013 at 6:16pm

I dont have my appointment through, with Dr Harries, yet Celia. I think I may give Gluten a miss. When I've looked in to it before it seems like it's in everything. I've bought a couple of books on the kindle on the Paleo diet (I think that's what it's called). I haven't looked at them yet but maybe they'll be helpfull.
x

Comment by Heidi Short UK on January 31, 2013 at 5:38pm

Hi All
When I first went to my private dermotologist back in May 2012, my daughter came with me, she asked him face to face, is this disease heriditary and he said NO! He did however say, auto-ammune problems are heriditary. The confusion gets worse! We are getting such mixed messages, I will ask my dermotologist the same question next week and see if she says anything different! Has anyone got any questions they would like me to ask? My mum didn't suffer from FFA!

Comment by Susanne on January 31, 2013 at 4:56pm

Hearing that the Protopic made things worse is worrisome. Oh no! I just got back from a follow-up with my Acupuncturist/Nutritionist, and we've determined that things are definitely better and she once again emphasized that for people with autoimmune conditions, gluten has to go, so I'm really committing myself to a life without it. I figure I've been around 52 years, I've had a lot of bread and pizza, I can do this. She wants me to curb my 1-2 glasses of wine/night habit and that's going to be hard, but February I'm taking it for a test-drive. Jules, good luck with the gluten-free diet. There are a lot more products on the market now since Celiac's disease seems to be more widespread. It's so much easier.

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

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