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: 599
Latest Activity: Jul 25

Discussion Forum

Dermatologists who specialize in alopecia?

Started by NorthCarolinaMama. Last reply by LauraLGiraldo Jul 25. 2 Replies

Hope everyone is having a great weekend!I'm a freelance writer working on a story about alopecia. I need to find a dermatologist at major hospital or teaching institution to interview -- any suggestions?I've already reached to physicians at Duke,…Continue

Food Allergy Testing question

Started by NorthCarolinaMama. Last reply by DragonandFox Jul 22. 11 Replies

Hello!I was wondering if anyone has been tested for food allergies to determine if a particular food is causing inflammation, which in turn could exacerbate FFA. I had the skin test a couple of years ago at an allergy clinic, and it came back…Continue

Hair Toppers

Started by Leni. Last reply by Lang Bozic May 22. 10 Replies

I am interested in getting a topper but don't know where to go for one. Having one of those weeks when the hair keeps falling and I am not feeling very comfortable. I don't want to spend a lot of money. Thinking of ordering off the internet. Please…Continue

Get Ahead of Hairloss Event plus new information on FFA

Started by Liz. Last reply by Carol Aug 7, 2025. 11 Replies

Hi I don't post on here much so I may well be giving information which you might have been discussing already. Are any of you in the UK going to the Get Ahead of Hairloss event in London at the end of September? It has been organised by Dr Wong who…Continue

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Comment by MJ on December 14, 2014 at 7:40am
Natalie, I don't know what PRP is but i have been using Rogaine On my eyebrows for nearly a year and have managed to hang on to my brows. Have been also using Elidel since Sept and I have had some new growth.
Comment by NatalieW on December 14, 2014 at 1:56am

HI everyone - just wondering whether anyone has had PRP and found it helpful.  I have just had my first session and wondering whether it is worth the expense. Also, wondering if anyone uses Minoxidil on their eyebrows? thanks

Comment by Sad in chicago on December 13, 2014 at 11:37pm

Regarding the dry eyes: Put genteal night moisturizer for eyes in before bedtime, it is sort like vaseline for your eyes, and then use Systane eye drops first thing in the morning before you get out of bed......this all helps.  My eye doc turned me on to it.

Comment by MJ on December 11, 2014 at 9:36pm
Marilyn, that would be great!
Comment by Marilyn on December 11, 2014 at 8:47am

MJ

I'm not a member but would certainly join and have no problem attending a meeting with you-I would look forward to meeting someone who is experiencing the same diagnosis!

Comment by MJ on December 11, 2014 at 6:12am
Marilyn, have you attended the CARF support group in Detroit? I got only one communication from them in the past year about a meeting but I was reluctant to go down to Henry Ford Hospital by myself.
Comment by MJ on December 11, 2014 at 6:06am
Cubbieblue, i was in a hurry yesterday and meant to tell you that i would be happy to help you with any breast cancer questions or support if you would like to email me. Believe me when I say, there will come a day when BC will not rule your world..
MJ
Comment by Classical Anne in NC mountains on December 10, 2014 at 11:30pm

My goodness, Ladies!  So many dry eyes!  I have struggled with dry eyes, stuck together and burning in the morning, burning in the evening to the point I cannot tolerate a ceiling fan, burning so much late at night that I can hardly read or watch TV, and occasionally [but not often] itching like mad!  Although it has been worse in the last couple years, I have experienced it for many years.  I honestly never thought to consider it a symptom of anything else.  But with the number of autoimmune diseases I now have, perhaps there is a connection to that aspect of it.

I have never taken Plaquenil, so that's definitely not it in my case.  But I have also always had extremely dry hair, dry skin, dry mouth, dry nostrils, my husband even says I have dry wit.  I have used eyedrops on and off for a couple decades, and I gave up wearing contacts close to 30 years ago.  Conclusion: in my case dryness is not a symptom or result of anything to do with FFA, but it certainly could have been an insidious catalyst.

Cubbie Blue, I am so very sorry to hear of your breast cancer diagnosis.  I know you must have a fine oncologist in Chicago, and hope that your therapy is entirely successful, and not too uncomfortable!

Comment by Marilyn on December 10, 2014 at 10:23pm

Hi MJ-I'm in West Bloomfield.

Comment by MJ on December 10, 2014 at 8:22pm
Hi all, I have had dry eyes, though not severe, over the years. Cubbieblue, I am five years out from breast cancer. The thing that started my downward spiral was tamoxifen I took for 3 years and 2 months after my surgery. I could write a book on it!

Marilyn, I am in Michigan too, but don't need eyebrows yet. They are holding there own with the rogaine and elidel. What part of Mich are you from. I am in Livonia.
MJ
 

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