Frontal Fibrosing Alopecia

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Frontal Fibrosing Alopecia

This is specifically for frontal fibrosing alopecia sufferers. To share information and support each other.

Location: Dubai UAE
Members: 343
Latest Activity: on Friday

Discussion Forum

Newly diagnosed in California

Started by Tinsel. Last reply by Tinsel on Thursday. 21 Replies

I'm 62, live in California, and have just been diagnosed with FFA.I was diagnosed hypothyroid last fall and my hair loss was attributed to that. After I noticed about an inch of hairline loss, I Googled "postmenopausal female hairline" and up came…Continue

2016 CARF Conference Information/Summary/Discussion

Started by SJC. Last reply by Will Be Healed on Wednesday. 51 Replies

Hi All,I'm back from the CARF conference and thought I'd get a post going to share what was learned/presented and start discussion about the same.  I didn't get a chance to meet either Nancy or Sally  from this group unfortunately.  I'm sure each…Continue

Mycophenolate mofetil (MMF)

Started by Jacq. Last reply by Lo Aug 19. 14 Replies

Hi all.I am a regular reader sometimes commenter here.  I am 45 living in Adelaide, Australia.  I was officially diagnosed last year after about a year or two of symptoms.  Like many of you I had vague things going on which I now realise was FFA.…Continue

Another FFA Diagnosis

Started by Minter. Last reply by Minter Aug 18. 31 Replies

Hi All,I have just been diagnosed with FFA, so here I am- I am 52 years old, well into menopause and it is almost like I just woke up one day, to 2.5 cm less hairline (measured by the dermo) no hair on arms & legs and thin eyebrows- when did all…Continue

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Comment by Minter on Friday
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 Bu US Illinois on Thursday
Minter, you hit the nail on the head! Good Luk on your follow uo!
Comment by Minter on Thursday

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 Bu US Illinois on Thursday
Minter, I love that you say once you started telling people, it became their problem , not yours. I applaud you. Yea on the scarf too! I go back to Derm on Mon. I have a long list of questions. I will update after apt.
Comment by Minter on Thursday

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 Bu US Illinois on Thursday
Thanks DeniseC for the encouraging words.
Comment by DeniseC on Thursday

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!

x

Comment by sallylwess on Thursday

CurlyK, thanks for sharing you experience with us.  Good for you.  We all salute you.  I also am going out more and more without my hair or even a wrap or hat.  It is freeing.  I'm not sure I could have the confidence to do this if I were working. I bet your scarf looked wonderful.  Now, you get to choose how you wish to present yourself each day.  That is a good place to be.  

Comment by Bu US Illinois on Thursday
CurlyK, I am so proud of you. It has to be so freeing. I have been brooding about my diagnosis for a month. And I am tired of it. You have really inspired me. I needed to read your uplifting post tonight. Thank you for sharing. Hugs! I hope I can get to where you are someday soon.
Comment by CurlyK on Thursday

I 'came out' at work today. Wore a pretty scarf with a pin on it. I had double takes because people aren't used to seeing me with my head covered but overall I had support and compliments and, yes, some questions (are you ok? Is it for your religion?). I just went with it and told people I have an autoimmune disease that causes permanent hair loss. It is what it is! I feel strangely liberated and not so depressed now that I don't have to keep trying to hide it anymore. Thank you for your support on here. Hugs to my FFA sisters!

 

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