So sad...

I was officially diagnosed this week. I knew what it was, but hearing the words hurt so badly. My dermatologist seems to have such high hopes that we will keep this under control with plaqenil and injections, but I read post after post on here and it doesn't seem like it really works. Is it even worth it to do these things? I've been praying that I could keep it at bay and not have to else at anything, but it seems as if most of the folks on here end up having to. Are there any success stories about the medicine?? I am looking for some ray of hope. Just so sad. I have to be strong for my 8 year old... But I'm having a really hard time. Any help or words of experience would be a blessing. Does this thing always lead to a wig or topper??

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Permalink Reply by Lo on February 1, 2015 at 2:00pm
I was diagnosed with FFA. I've had hair loss for 4-5 years, and list my eyebrows and leg hair... But I was always able to mask the head hair with my haircut. I have bald patches above both ears and up into temple areas. I was told many years ago it was AA... So I'm not sure if I caught it "early"... Considering it has been happening for a number of years. So I guess I'm just hoping to salvage what I do have on my head... Or slow down the loss. Just sad... I need to snap out if it... I know that. Your words are a good start.
Permalink Reply by Cheyenne on February 1, 2015 at 7:58pm

I'm so sorry.  It is a really hard diagnosis.  I'm newly diagnosed and did do the shots - which didn't work for me, but I talked to women in the waiting room who had great success.  I was devastated when I found out and so was my six year old daughter.  It's been a few months and things are getting easier and I am more comfortable with it now.  I wish you love and all the best of luck with whatever you decide to do.  And no, it doesn't always lead to a wig or topper.  There are many people that have a few spots that recover within a year (you just might not find them on this site ; ))

Permalink Reply by Lo on February 1, 2015 at 9:19pm
Well I hope one of those people are you. How long have you had it before "official" diagnosis? Mine has been happening for 4-5 years... I feel like I should've pushed my derm to do something. They said all along it was AA. Ugh. Anyway,?how are you doing with the loss? Slow moving? It's nice to see another woman mention her small child. Theybreallyndo bring is strength and unconditional love. God bless.
Permalink Reply by Cheyenne on February 2, 2015 at 6:58am

I think I have had it for years, but a mild form.  I've been losing hair for the last several years, but my doctor kept saying it was a fungal infection, low iron, thyroid... It wasn't until September (when I was losing tons) that I finally went to a dermatologist and had a scalp biopsy that they said it was AA.  It's my fifth autoimmune disease which includes vitiligo. My hair loss is sporadic.  I'll have days where I lose tons and others nothing.  I have lost everything on the top of my head.  I wear a topper, but need to upgrade to a full wig.  I'm finding the transition really difficult.  This has been a rollercoaster ride for me.  Faith and family get me through the difficult times.  God bless you as well.   

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