Comment

Comment by Maddy, California, U.S. on June 27, 2014 at 8:00pm

Thank you Anne for that link to the buffs! I love a few of them and just ordered two! They should be great for hiking this summer! I have never noticed the sun affecting my FFA either...other than the more noticeable white band that others have mentioned...and I live in Southern California!

Comment by Celia on June 27, 2014 at 5:50pm

I always wear a hat - SPF 50 according to the label when gardening.  Always factor up daily anyway. Anyone with expensive eyebrow tattoos should protect them with sunscreen or they will fade and the process begins again perhaps sooner than necessary.  Do not believe that exposure to UV could possibly trigger FFA.  If it were that simple we would be on the brink of a breakthrough !  And why would this exposure set off a killing spree on the hair follicles, starting with eyebrows, then forehead, above ears and backwards.  The weather forecast is not so good this weekend.........but it's good to bat ideas around, thank you !

Comment by Classical Anne in NC mountains on June 27, 2014 at 3:08pm

I don't think Catherine's MD was suggesting a link between sunburn and FFA in general.  But if it was a significant burn, it could have been a contributing trigger.  Just as the stress of caring for a dying parent [or whatever has caused significant stress in our lives] may have helped to trigger this autoimmune response.  But the stress was not the cause, just the trigger that stirred up the autoimmune reaction that was lurking in our system.  That's the nature of autoimmune diseases.  And though it may be hard to think of sunburn as stress, I once was so severely burned that I could not stand without passing out, and was diagnosed with 'sun stroke'.  And the burn itself was an over-reaction, apparently, to hormonal changes, as I was with my family, each of us having the same amount of exposure, and no one else was burned.

Anyway, I have more or less hidden from the sun, and been careful with sunscreen ever since.  Now with FFA, I do notice how sensitive the exposed scalp is, and how pink it turns in an instant [how do you put sunscreen in your hair?], but like Liz says, all the newly balding areas will not tan.  The pink goes away and you're left with white.  For me, the solution is a hat or scarf that covers all the thinning areas.  But if you want to actually go swimming, a Buff would be the answer.  The good ones, such as the UV Half Buff, are made with water-wicking fabric that keeps your head cool and gives UltraViolet protection.  Here's the link to an original U.S. supplier http://buffusa.com/sports/collections/uv-half-buff-reg/styles/filte....  I'm sure something similar can be found elsewhere in the world.

Have a grand time in Morocco!  And happy sunny days to the rest of us!

Comment by Liz on June 27, 2014 at 1:51pm

The skin where I have lost my hair is pale and does not tan. I have read that skin which is scarred is more prone to skin cancer so I wear a hat when I go out. Also when the skin on my face tans, the white stripe on my forehead looks more noticeable x

Comment by Mareea on June 27, 2014 at 1:19pm

Catherine, I have no idea why your Dr suggested sunburn as a trigger. I live in Adelaide Australia where the sun blazes for months. If sunburn was a trigger then there would be a significant statistical variation in the incidence of ffa in this city and that is simply not the case. Enjoy Morocco.

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.

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