Comment

Comment by Annie on June 27, 2014 at 10:14am

Catherine, I am very careful with sun exposure and don't think I've ever had a sunburn on my face in my life.  I don't think it has anything to do with my ffa.  It's interesting that the doctor suggested that a sunburn might have something to do with ffa.  I've often wondered if it has something to do with the ingredients in sunscreen since I've always been diligent about applying on my face right up to my hairline.  Have fun in Morocco.  I'm totally jealous!

Comment by Catherine on June 26, 2014 at 4:54pm

Hi ladies,

I wanted to ask you about being in the sun with FFA. I have been very cautious ever since I was diagnosed with the condition back in November 2012. Stupidly, I got sunburnt in the summer of that year, and a leading dermatologist even suggested that this could have triggered my FFA. Is this something that has ever been suggested to you?

I am about to go to Morocco and I am a little nervous about being too exposed to the sun. I notice that my scalp gets very itchy when it is hot. I have several large scarred areas around the hairline, and my forehead is somewhat scarred in places too, with areas of pockmarks. Will these areas be extra sensitive? Should I cover up completely or is it ok to be out in the sun a little bit (with lots of sunblock of course)? 

Thank you so much for any advice you can offer!

Catherine xx

Comment by Celia on June 25, 2014 at 6:34pm

Jess - thank you - it's just a matter of time and we must all be hopeful ! How did you come across this news ? x

Comment by jess on June 25, 2014 at 3:58pm

I know I am very excited about it!!!!  :)

 

Comment by Jen on June 25, 2014 at 11:59am

Thank you Jess. Great news. Great hope.

Comment by MJ on June 25, 2014 at 11:51am

Jess, thank you for sharing this! The bottom line that it apparently turns off the attack on the hair follicles gives great hope!
MJ

Comment by jess on June 25, 2014 at 10:41am

I wanted to share some hopeful news with all of you!

please read:

http://www.ibtimes.co.uk/tofacitinib-citrate-arthritis-drug-that-cu...

 

Comment by Debs on June 16, 2014 at 4:17am

Please check out "wearing wigs/hairpieces" discussion if you are in the UK. I have posted details of salons that make hair systems/pieces that members of our group have already used so we can safely recommend them.

Comment by claire on June 11, 2014 at 12:14pm

Hi Ladies,

I have today seen a great Doctor who listened and wants to send me for a second opinion to someone who specializes in Auto Immune and Dermatology.Does anyone see any Consultant in London who might be worth a visit.

I also think I may well be thinking about a a hair piece soon maybe for my fringe. I know the ladies near Birmingham see a good person how about in the South East- Any suggestions welcome.

Claire.

Comment by Jen on June 9, 2014 at 1:23pm

thank you Alice. I am happy that your eyebrows have been restored. This is really helpful information.

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