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: 351
Latest Activity: 4 minutes ago

Discussion Forum

Newly diagnosed at 31 years old

Started by owlie. Last reply by Daisy 4 minutes ago. 11 Replies

Hi, I've been a longtime lurker, but this is my first post. The discussions here have been incredibly helpful so far, so thanks to all! Unfortunately, I've been diagnosed with LPP and/or FFA at the young age of 31. I believe that I first noticed my…Continue

Boostnblend powder

Started by Minter. Last reply by femmemuscle Sep 23. 3 Replies

After reading about Boostnblend on Corner of Hope & Mane, I thought this might just do the trick for me at this stage of my hair loss, so I ordered it for $39.99 with Prime on Amazon-It comes in different shades, from white to black and I got…Continue

Newly diagnosed in California

Started by Tinsel. Last reply by Lisa Sep 21. 24 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

BLOOD SAMPLES NEEDED BY GUYS HOSPITAL LONDON FOR FFA RESEARCH

Started by Debs. Last reply by Minter Sep 17. 16 Replies

Please email Dr Christos Tziotzios at Guys hospial in London if you are willing to give a blood sample to help his FFA research. The research clinic is open on Wednesdays. If you can't get to London you can give a sample at a clinic near you, they…Continue

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Comment by Minter on Monday

I wish I could help you Ana_Brazil :-( but I am in New York state

As for me, I am here to complain, AGAIN! I have been taking Plaquenil since Thursday (it is only Monday today) and it is making me feel so nauseous, like very sick to my stomach and all it involves & I am only taking 200mg 1x per day- I have tried taking it at night, in the morning, with food, without food and always feel ill afterwards.  So I am going to stop taking this too, after having to stop minocycline last month because the side effects from that also hit me so badly.  

I don't understand why I am getting every side effect there is lately, it is very frustrating.  I am going to finish off the Clobetasol (no side effects from that, luckily) then I go back to the dermo. next week to figure out my next step, which I think as of now is to stop the medications completely, I will speak with the doctor and see what she says. 

Comment by Ana_Brazil on September 19, 2016 at 11:15am
Hi!
Can someone recommend an experienced Doctor in San Francisco, please?
Comment by CurlyK on September 16, 2016 at 1:47pm
Thank you all for your kind thoughts. Jen, I was also thankful for my curls that enabled me to hide my alopecia as long as I did. At least I could tease them up and over the receding hairline and cover my scalp with toppik. I'm glad not to have to use that any more as it was always all over my bathroom!
Comment by Anne Louise on September 16, 2016 at 1:28pm

CurlyK I am so sorry for your loss of your Dad. I was taken aback at the depth of my grief. He was 89 and lived a long full life, a peaceful death with all of us present...but I still wish I had another 89 years with him. It's been three months since he passed and now I'm not crying every day, so I guess that's an improvement. I will keep you in my thoughts and prayers.

Comment by Jen on September 16, 2016 at 10:56am

CurlyK,

My condolences to you and your family. Today (11.45am) marks 5 years since my husband died of cancer, so we share a sad day together. I have curly hair also. Very curly (actually 3/4 inch coils).  I always hated my uncontrollable curls but they have come in quite useful since FFA. FFA started in November following his passing.  I usually put some dark eyeshadow over the spots and along the missing hairline then I pull the damp curls forward into position over the bald parts.  I am sure that people who know me well realize that something looks different but they cannot quite figure out what is.

Comment by Bu US Illinois on September 16, 2016 at 10:29am
I am so sorry about your Dad's passing. My thoughts and prayers are with you.
Comment by CurlyK on September 16, 2016 at 8:23am
I haven't slept much and my head has been itching since yesterday both my real hair I can access and under my hairpiece. I usually don't itch but I'm sure it's the stress. I have also been faithful to an AI diet lately bit got off it these last few days as I've been eating whatever was quick and available while with my dad in hospice.it shows me what a difference diet makes when you have an autoimmune disease.
Comment by Minter on September 16, 2016 at 8:09am

I am so sorry that you have lost your dad CurlyK, my thoughts and sympathies are also with you. 

Comment by Minter on September 16, 2016 at 8:09am

I am so sorry that you have lost your dad CurlyK, my thoughts and sympathies are also with you.

Comment by DeniseC on September 16, 2016 at 4:58am

So sorry to hear your news, but (as probably most of us would know) it is a real blessing when the end is peaceful - makes a huge difference to your feelings now and in the future.

I know exactly what you mean about the hair - when I had the intralace system 'installed' (!!) I felt as if I had had an animal plonked on top of my head. Very strange indeed. And I too had to find out what suits me best - not the clinic who styled it in the first place, but me. So my hairdresser came (to my home) and thinned it out and shaped it, again like your's - not so heavy.

Next time I have it done (shortly - I was told the actual hair would need to be replaced around 4 months, but it is now going towards 7 months - hooray!) I will know exactly what to ask for.

It certainly took me a while to stop being aware of the new hair, though. I felt as if everyone was watching me - they weren't of course, or if they were, it was wondering why I looked different. I don't think of it now - it is just part of me. The only time recently that it has impinged on my consciousness at all (other than when washing it, etc.) has been when it has been very hot, and then it is not the hair per se, but the tape at the front. I would very much like to tear that off when the temperature soars (yes, England does get very hot, too!) - but stuggle on! It is worth it.

Hope the next few days - and all the ones after that - are okay for you and your stress starts to diminish.

My thoughts are with you.

Denise x

 

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