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Comment by Sad in chicago on August 30, 2016 at 2:53pm

And this combination of drugs, along with an FFA diagnosis, is actually growing back some hair on your hairline, forehead and around your ears?  

Comment by Anne Louise on August 30, 2016 at 1:46pm

Bu that is such wonderful news! And Ammie you said your derm stated that regrowth is possible. While I certainly hope all of this is true, my cynical side is wondering. If the follicle is scarred over, how can regrowth be possible? Can anyone explain the physiology behind this regrowth theory?

Comment by GEMINIJEANNE on August 30, 2016 at 12:50pm

Thanks so much for the info - I will make a note a ask my doctor to prescribe it for me. I wish you continued success with your treatment - such a great boost to our spirits !!

Comment by GEMINIJEANNE on August 30, 2016 at 12:43pm

I would really love to know what meds you are on Bu . I am excited to some good news . Just the hope of some kind of treatment that helps would be great. I am continuing with the hydroxychloroquine as my Dermatologist after 3 months use is thinking it is helping. I myself am not so sure. My head is still itching most days which tells me the disease is still active. Please let me know of any other medication that you have found to help. 

Comment by ammie on August 30, 2016 at 10:22am

Bu US Illinois. That is fantastic news about the re-growth! Congrats. My derm said they now know re-growth is possible and I'm so glad to hear someone is experiencing it. What treatments are you on?

Comment by Mike'sDeb on August 28, 2016 at 3:48pm

For as long back as I can remember I have wanted to have long, full, bouncy beautiful hair! As a kid I longed for it, and cried for it every time my mother cut it off. I wanted Farrah Fawcett hair and my mother gave me the pixie, the shag, the Dorothy Hamill...anything short, flat and straight. When I was old enough to be in control I nurtured it and grew it all the way to my waist! After my second child was born and I had less time to spend on it I compromised and cut it to my shoulders. I have always received complements on it - the cut, the style, the color. My hair was ME. Such bad luck that my lush hair is being stolen from me a second time. Just like in my childhood years - I have no control of the "thief".

Funny thing is I continue to receive complements. Only now I appreciate them even more. It takes more work to get my hair how I like it and hide the bare spots and the white stripe. My son once told me that "you really can't tell mom, the only people who can really see are the ones right up in your face and those people don't care anyway". I have learned that anytime you can pay a complement to someone DO IT...you never know how much it could mean to them.

As I have reached 50 I have also become less self aware and realized everyone is dealing with something whether you can see it or not:
I have a friend whose son is severely autistic. I have a friend whose son is a quadriplegic from a football injury. I have a friend who is legally blind in one eye, was never able to have children, and has other health issues related to type 1 Diabetes. I have a friend whose daughter is an alcoholic and is facing legal issues.
The list goes on...for all of us.

No one is looking at us or judging us because of our hair. We may perceive that because it is such a big thing to us but in reality the majority of people are really pretty occupied with dealing with their own "stuff".

Let's hope we can all help each other through our life struggles. Try complementing someone today...it just may make someone's day and make you feel great too!!

Comment by Minter on August 25, 2016 at 8:17pm

Thank you BU, not to say that I still don't have moments of huge self doubt and la k of confidence, but I'm much better then I used to be :-)
And good luck to you on your own follow up!!

PS this is the first time I'm responding on my cell phone and I don't know if it's just me, but the font is so light I can barely see it so please excuse any typos!

Comment by Minter on August 25, 2016 at 11:44am

BU, I feel like I have spent the majority of my life being so self concious and worried about what other people think of me.        I think, I hope, that I have finally gotten to the point where I will live my life the way I want to live it and be comfortable in my own skin, but it has taken me a long, long time to get to this point. So if people have a problem with the way I am, or the way I look, after all this time, they are the problem, not me, not anymore, not after wasting half my life on people whose opinions should have meant nothing to me to begin with.  Life is too short and all of those people, the ones who have nothing better to do then judge other people on their looks or whatever, I don't want them in my life, the people who don't give a hoot if I don't have one hair on my head, they are the ones that matter to me now.

Oh and I go for a follow up the week after you, also with questions!

 

Comment by Minter on August 25, 2016 at 8:56am

CurlyK I am so happy for you, when you start telling people about this feels like a great burden that is lifted when it is shared!  

BU US Illinois, I have had my diagnosis more or less about as long as you and it is so hard to accept this sometimes, but I do know this about myself, once I started telling people, it became their problem, not mine, if they had a problem with me losing my hair!

Oh yes and I wore a scarf as a headband to church on sunday, so that is my own small step, hair loss or no, I have always loved the look of scarves but never felt comfortable in them! ;-)

Comment by DeniseC on August 25, 2016 at 5:34am

YEAH! Well done you. When I 'came out' I was truly surprised by the matter of fact responses from people - interest, for sure, but in the auto-immune problem, not in the fact that I was seemingly going bald!

Why I was so surprised I am not sure, but at the time it was so enormous a step for me, and my confidence so low, I think the whole thing was utterly out of proportion.

I now quite happily talk about it - but when I choose. And I spread the word about, for example, the emerging research relating to spf. It's not that I believe everyone is at risk, but ....

So good on you. And Bu US, you have only had your diagnosis for a month. Don't expect miracles of yourself! From my experience, and from reading of the experience of many others on this forum, it can take a great deal longer than that to come to terms with what is happening.

But you will get there - that is clear from your posts. Try, try, try to stay positive, and keep on posting. It helps!

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