Comment

Comment by Jayne on September 29, 2019 at 6:24am

I've had FFA for around 8/9 years. A couple of years ago my doctor advised me to have some allergy tests done. These showed that I was allergic to a ethylhexate salicylate which a common chemical found in sunscreen. I discovered that this was in my makeup, sunscreen and foundation. So basically I was using it all the time. I swapped onto natural skin care, foundation without sunscreen and mineral sunscreen. My hairless has now stopped or is so slow that it's hard to notice and I'm off all meds. I've also been discharged from hospital check ups. I've had some regrowth particularly round the temples and nape of my neck.

I've swapped onto mineral sunscreen which has titanium. dioxide in it. I know that this  is causing concern at the moment but I haven't had any problems with it. Having said that I don't use it anywhere near my hair line now. I use products from Green people and they have some interesting information re titanium dioxide. There are two types of it, one good and one bad. they use the good one and coat it to make it too big to pass through the skin so if there any any problems with it then the problem must be topical.

I think it would be a really good idea to be tested for allergies as it was a game changer for me.

Comment by Lu on September 29, 2019 at 12:59am

My dermatologist says the increaing number of cases of FFA correlates with introduction & use of SPF in moisturisers etc over the last 20-30 years & disease onset time ..., think about it ... how many under 30yo have it compared to (I hate to say it) middle aged & older?

Comment by Elizabeth W on September 27, 2019 at 9:32pm

Thanks for sending the link.  I have printed the article.  FFA must be going from a rare disease to now being considered an emerging epidemic, with increases of cases seen at major hair referral centers.

Comment by ohnonotme on September 27, 2019 at 8:14pm

Not sure if the link below will work. Doesn't give hard numbers, but apparently FFA is increasing in frequency of occurrence, as there is now considered to be "an epidemic" of
cases:
https://www.ncbi.nlm.nih.gov/m/pubmed/30815440/

Comment by Elizabeth W on September 27, 2019 at 5:44pm

Does anyone know what percentage of the population has FFA?  The United States National Institute of Health's website lists it as a rare disease.

Comment by illustr8r on September 27, 2019 at 2:56pm

Okay ladies, show of hands if you’ve developed a lot of milia (those not pimple white spots under your skin) since your FFA kicked in. This summer my chin and cheek chicken skin area has just broke out with them continuously. I even had one in my eyebrow! Ugh!!!

@Jules What you wrote a few posts below is spot on. :)

Comment by Jules Australia on September 26, 2019 at 9:36pm

Plf, I also have 'bouts' of searching for any missed 'breakthrough' information on the disorder, hoping i'll find something new or positively enlightening. (Wishful thinking I know)... so I get it ... we all need Hope, it's what keeps us going; but I feel I have to be as reealistic as possible in facing what's likely ahead of me ..... like the wig, scarves path (as Minter said) & thinking about how I will manage to cope, reading stories & finding inspiration from others who are having to deal with all that. Plf, I resonate with same words/thoughts you have of a future relying on 'wigs' .... but then thinking of the 'heat' (espec in our Auzzie summers - getting worse every year), but then trying to be grateful that I'm alive, loved, & otherwise healthy !!  .... still, it sucks!

Comment by Minter on September 26, 2019 at 8:48am

Plf, exactly right- I do continue to read info about FFA thinking maybe they have made a breakthrough this time!  But, with so many bizarre variables with this disease it probably will never happen.  I do find myself reading more and more about women who have completely lost their hair and how they deal with it as this is the road I am on now as well. At this point I don't even look the same anymore with my new hairline and I have accepted the fact that within a couple of years if not sooner my head will be shaved completely and it will be a wig, hats, scarves or just my big shiny head out there in the world and people will just have to deal with it.  

Comment by Plf on September 25, 2019 at 10:24am

Wow Jules, you have encapsulated it all..so true, my daughter says why do you keep getting emails re FFA when you have decided not to go down the drug treatment regimen..and it's probably true, why do I need to be reminded..I am still holding. Out hope for a cure, but let's face it it's a woman's issue..so it doesn't matter that much.

So moving forward....ha ha.i have nil control over condition, I'm loved and it will be a wig...killer in the heat , but at least I'll be alive! PS it sucks

Comment by Jules Australia on September 24, 2019 at 10:12pm

Ps: I meant t ask hbw did your biopsy show AGA as well as LPP,  & do you feel th minoxidol is helping in any way ?.... my understanding is it has no affect on Lpp/ffa, but may be helpful for AGA

• ‹ Previous
• 1
• …
• 10
• 11
• 12
• 13
• 14
• …
• 507
• Next ›
• Page