Comment

Comment by Minter on June 6, 2018 at 8:02am

Don't be sorry @Plf!  This disease is absolutely the most frustrating and sad and maddening and blehhhhhh, I could go on and on and we all could fill in the blanks with words to describe FFA!  Plus it is made even more frustrating because it seems we have to pretty much self diagnose and treat ourselves.  

I am going to get my hair cut and colored today, I used to love going to get my hair done and nowadays it is always so depressing afterwards :-(

As long as I am at home in my own mirror my hair doesn't look so bad to me ( also the sides and top are always powdered so no shiny scalp to be seen) but sitting in the salon's chair with my hair freshly washed and no powders or anything and the bright lights, ughhh, it is always 6-8 weeks huge wake up call as to how FFA is steadily creeping along, making my hair thinner and thinner and less and less. 

Comment by Plf on June 6, 2018 at 7:43am

Hi all, yes totally frustrated by FFA, the problem is that it is totally in your face..no irony there..you see it's stupid effects every day...as I have said before ..given up on miricle treatment s, deatologist just push their treatment s don't care re side effects..it sucks..hope there is a break through soon..but I have tried to contact people on this website with diagnosis years ago, they don't respond so I have ..so negitive I know..there is no cure.....sorry just pessimistic..me...

Comment by Halfbakedwho on June 6, 2018 at 7:00am

I am going to look into the London conference. I too Beez am seeing a lot of "inroads". Loss is slow and marches on - as you say exactly. I need to be more consistent in taking my treatments, but (I repeat myself, and many of you) since they don't seem to make any difference I let it slide. That being said I should try harder with the castor oil. It's just so damn greasy - and I'll need to shampoo daily, making it a bit moot since my hair is dry and I shouldn't shampoo every day. 

However, I did go ahead and schedule with my first dermatologist at the specialized clinic in Paris, moving away from Dr. Famous Man. She wanted a biopsy, she wanted to throw the whole kaboodle of diagnostic solutions both proven and unproven, but hey she was thorough, scary-thorough. 

The middle of the night is hardest. 

I don't know what to say that hasn't been said already. I throw up my hands, I smack my forehead (six fingers now), I pass...

Comment by Jess on June 6, 2018 at 5:21am

Thanks, BubbaLu! I'll check it out.

Comment by Beez on June 5, 2018 at 6:26pm

As I see more 'inroads' along my hairline this week, I am so damn frustrated and angry. What is the point of all these doctor's appointments and conferences, these unproven theories (e.g. Sunscreen), untested treatments, very little research!? Sorry folks, I am in a bad way today. Feeling ugly. The loss is slow but it marches on. 

I am considering homeopathic treatment as in the past I have had some success with homeopathic medicines when traditional meds failed. Anyone know of a good homeopathic practioner in the mid-Atlantic to north-eastern area of the US?

Comment by Afraid on June 5, 2018 at 2:54pm

Thanks Liz.  It looks interesting, although I’ll be wearing a wig by then!!! It would be great to meet up. 

Comment by Liz on June 5, 2018 at 12:58pm

I went to see the lovely Dr Wong in London today who has an interest in FFA and has attended the CARF meeting when it was held in London. She has organised a day in London in September where experts in all areas of Alopecia (medica/psychological /beauty etc) will be talking about what they do. If you go on the following website you can view the details. It's expensive but looks interesting... I'll be popping along. www.getaheadofhairloss.com

Comment by Afraid on June 5, 2018 at 12:17pm

I’m throwing everything I can at this horrendous condition and it continues to proceed at a rapid pace!!  I try to be hopeful but so hard when hair is literally disappearing in front of me.  I had no idea the pace would be so rapid.  If it was a possibility I would embrace life as a hermit in complete contrast to my once sociable self... how can this  be happening? Sorry this sounds so self absorbed....boohoo!!!!!!!!!!!!!!

Comment by BubbaLu on June 4, 2018 at 8:12am

Jess,

i play golf so I am outside a lot and have not noticed this issue.  I wear a facial sunscreen that is available on line and it is made for skin prone to acne, rosacea and hyperpigmentation.   Elta MD Skincare.  I highly recommend it and you can get it tinted or clear.

i was trying to upload an image, not working out so well.    

Comment by Jess on June 4, 2018 at 4:39am

Hi All,

Has anyone else noticed an increased sensitivity to sun? I recently went on a trip that included visiting Black Canyon City, AZ to see Saguaro cacti (super cool!). I was not in the sun much, but did spend about 10 minutes taking pictures in direct sunlight. That night I had what appeared to be an allergic reaction of sorts on my face: itchy, red, swollen, etc. At first, I thought my rosacea was acting up, but I started to realize it was definitely something else. I had tried some new sunscreen on the trip (Physician's Formula Translucent Powder with Titanium Dioxide and Andalou Naturals 1000 Roses Daily Shade) but the active ingredients were nothing I haven't used in other products.

My face was inflamed for almost a week, and I ended up going to the doctor. I was prescribed 5 days of oral steroids and told to take anti-allergens twice a day. All of it helped, especially the steroids, and it went away. I have not used the sunscreen since, but not long after I walked four blocks in direct sunlight and my face got irritated again. What gives?? Is the related to FFA or maybe just another autoimmune issue? I'm thinking of forgoing a trip with my sisters in August because I don't want to be out in the sun : (  On a side note, my FFA papules seem to have gotten better after taking the steroids. I wonder if it's a coincidence and how long it will last. So many mysteries...

• ‹ Previous
• 1
• …
• 67
• 68
• 69
• 70
• 71
• …
• 507
• Next ›
• Page