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Comment by Rosie on November 9, 2012 at 9:07am

Hi
I'm new to this forum. I've had Seborrheic Dermatitis for 20+ years, and have recently been diagnosed with scarring alopecia. I'm still waiting for the results of the many blood tests, & the biopsies I had. They think it's either Lupus, LPP or just the S.Dermatitis gone crazy. I'm not having any treatment at the moment - just peering at my scalp each day and making do. I've not got a wig because the back and sides of my hair are still OK at the moment. All across the top is where the scarring alopecia is appearing. I'm making do with a wide headband & a large clip in hairpiece, but am looking at wigs to be prepared. All the really good wigs seem to be for people with no hair at all? Are there any good human hair wigs for people with some hair? I have a job in a school, so regularly stand out in windy playgrounds. I'm concerned about the hairline, etc, showing, and all the wigs I've seen seem to be so thick!

Comment by Debs on November 8, 2012 at 2:42am

Hi Amanda, thanks v much for your info. There is a group on this website for FFA and I have found other folk with FFA on the Alopecia UK website. So we are comparing treatment but options do seem very limited for scarring alopecias. Appreciate your support. XX

Comment by Amanda on November 7, 2012 at 10:43pm

Hey Debs, I have LPP but not FFA. I know people with FFA though. I haven't heard of that drug you mentioned. I have a different steriod lotion, shampoo and just got injections at my appt today. I am also taking a drug called Plaquinel to control the inflammation. From what I understand, this is the only option for scarring alopecias, to control the red, itchy burning. I hope you find other FFA people. Let me know if you need to chat in the mean time. Good luck!

Comment by Debs on November 4, 2012 at 10:08am

Hi Everyone, I have FFA a type of scarring alopecia. Been to see my dermatologist this morning, got results of my scalp biopsy and he has now precribed me with a steriod lotion, in the UK it is called Dermovate. Has anyone else tried this with their CA? and if so how long did you use if for? I know I can only use it for a couple of weeks at a time. Thanks for any info.

Comment by CJ- Christine from Ottawa Canada on October 2, 2012 at 9:32pm

I'm going to / jointly leading the CA session on friday and wouldn't miss the one with Dr. Jeff Donovan on saturday for anything.
I'll see you there. Come in time for the opening speaker. He is supposed to be amazing!

Comment by Amanda on October 2, 2012 at 9:07pm

Hey there! I have signed up for the (free for a limited time) skin conference in Toronto oct 12 weekend. There will be two sessions specifically geared towards CA research and the latest treatments. I am also looking forward to learning more about AA. In the least, I will post stuff for us on this wall afterwards. Take care!

Comment by Amanda on September 30, 2012 at 9:30am

Cj,
I am signing up for the conference today. Are there invitation codes available? I am really excited to see the two breakout sessions on scarring alopecia! we need to meet up, maybe over the lunch breaks?

Comment by CJ- Christine from Ottawa Canada on September 14, 2012 at 12:18pm

the conference is in Toronto - Oct 12 and 13th!
the LPP group on Facebook is let's put out the fire... lots of talk on it about paleo...

Comment by Amanda on September 11, 2012 at 8:38pm

Barbi, I think a group in Utah would be great! Maybe if we get one going we can share ideas?

CJ, I am definitely in! I would be happy to travel to Ottawa if need be. Far, but worth it. Where is the skin matters conference? Are your treatments and doctors in Ottawa? What is the name of the LLP group on Facebook?

Comment by CJ- Christine from Ottawa Canada on September 11, 2012 at 5:09pm

Amanda and other Canadians - HI!!! I live in Ottawa and was diagnosed with LPP and FFA last spring. I went to the CARF conference in boston in AUgust which was an eye opener. I'm trying to get a canadian group going and have arranged to have Dr. Jeff Donovan come to the Skin Matters conference and work with us CA patients in October. ANyone interested in coming? there will a session on friday oct 12 and another on oct 13th. If you are interested in coming I think it would be fabulous to learn about others' experiences and get support. there are lots of other very good sessions and speakers. Also financial assistance if needed. check out www.canadianskin.ca/conference2012

Besides that , I have found another group on this site for FFA people and a site on facebook for LPPers.
Its good to have all these connections. I am really grappling with the burning and the hair loss. I still haven't made it to a place of acceptance and am frustrated that there are no good solutions . In Canada there is very little support for rare diseases - frustrating. If you are Canadian and want to get a canadian CA group going. let me know. I'm willing to do some leg work around it. contact me via this site.. thanks Christine

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