FFA sufferer@37yrs

I am new to this site. I've been suffering with FFA for 6yrs now. I'm 37 and right after the birth of my daughter I got FFA. Took me 2 yrs to realize I was losing my hairline and eyebrows. I used to think my eyebrows were thinning coz of my post pregnancy . Thought it was normal . Now I barely have eyebrows and my hair has gone in 2inches easy. I don't suffer with any itching , only my legs used to really itch like crazy, then went on a gluten and sugar free diet and itching stopped along with migraines. But my ffa , I think , still kept on . Very hard to tell . I would like to know if anyone thought or heard of stem cell transplant , I am so tempted to look into it ,did anyone who suffers here ever try or at least have any info. I have tried so many things to fight this FFA. Now I am starting to get so down day by day, I have been 6 yrs trying to keep on with my life as normal as possible for the sake of my child. I'm tired of hiding it. This happened to me at such a young age.31, it ruined the joy of motherhood , and the bit of youth I had left . Stem cells might be my hope but I know no one who tried it .

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Permalink Reply by April on June 6, 2014 at 1:19pm

Hi Caro,

Welcome to the group. Sorry you are dealing with FFA, but glad you found this group!  I am 37 although, I believe my hair loss started around 32 as well.  I was diagnosed a year ago.  My hair loss was very slow at first, so slow that I didn't notice it, although now I can see it when I look at pictures of myself.  I started losing hair more rapidly after giving birth to my daughter.  I haven't tried Plaquenil, or any meds really. I am too much of a chicken I guess : )   I did try the steroid injections but was not pleased with the dents they created in my forehead so I stopped them.  I do receive UV laser treatment which seemed to be working  well, but I'm still not quite sure.  People also tell me that they can't notice my hairline.  I can still hide it by parting my hair just right, but I'm not sure how much longer that will be possible, so it's kind of a waiting game at this point.  I planning on eventually needing some sort of hairpiece, although somewhere in the back of my mind I'm still hoping to hold onto as much of my hair as possible.  It's crazy how much this has affected me, it really has changed my world, but I'd like to believe things are getting easier.  If it weren't for this group I wouldn't know another soul with this condition, so I'm glad I found it.  Are you in the UK? There are a few UK ladies on here have a fabulous recommendation for hairpieces if you look through the comments. It's interesting that you have had this for 15 years.  Many of the doctors claim this disease eventually burns out, but haven't heard of that happening for anyone yet.  Anyhow, welcome, and best to you! 

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