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: 228
Latest Activity: 13 hours ago

Discussion Forum

Essential oils

Started by April. Last reply by April on Wednesday. 10 Replies

Hi Everyone!I saw some posts in the comments regarding essential oils, so I thought I would share my experience with EO's thus far:)  I was diagnosed with FFA almost 2 years ago now, but I believe I've had it for 5 years or so.  I haven't done any…Continue

Eyebrows and Rogaine

Started by Trish. Last reply by Brooke on Tuesday. 5 Replies

Hi All -- I just read in an earlier post that Rogaine works for eyebrow regrowth.  I would love to hear from anyone who has tried Rogaine on your eyebrows and what results, if any, you experienced. Thanks. -- TrishContinue

Wig slipping

Started by silversurfer. Last reply by Kath UK on Tuesday. 1 Reply

How do you stop a wig from slipping

Having some treatment success-there is hope!

Started by Katy M.. Last reply by Sas Holland Feb 28. 21 Replies

I have FFA/LPP specifically.  I lost eyebrows 10-12 yrs ago in my early 30's- very slow progressing.  I lost my eyebrows in my early 30's over 2-3 yrs (10+ years ago).  My hair line started thinning and receding about 5-6 years ago  Very slowly.  I…Continue

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Comment by Brooke yesterday

Sallywess: Your story touched me too.   I also lost a daughter many years ago and can identify with what you may have experienced.  Fortunately, I too have other children (all boys) and they have kept me going.  Now I also have granddaughters and sometimes see fleeting reminders of my daughter.  Bless you.

Comment by sallylwess yesterday

Kat, that is very interesting!

Comment by Sas Holland on Wednesday

Thanks Kat, I will certainly have a good look into that option!

Comment by Kat on Tuesday

Hi Sallylwess & Sas, I have seen your comments that you were looking for curly hair that isn't black or dark. I found this link for a swim-hat-thingy and thought that maybe you could use that hair and get it made into a topper? http://hatswithhair.com/Order-Hybrid-Curl-Samples.aspx

Comment by Sas Holland on Tuesday

wow  Sallylwess, your story really touched me!

what a lovely idea of donating your daughters beautiful curls and how sad that it wasn't possible. I have 2 daughters and a son myself and I cannot imagine how it must feel losing one of your children. I think you are very brave woman and you look beautiful in your profile picture.

What a pity your other daughter doesn't want to cut her hair for you. If it where the other way around you probably do it for her immediately, that's how mother love works.

My hair does not grow very fast, I've tried very often to let it grow, but always stopped halfway through. I wish you all the luck in finding a better store with the best service for another topper,

thanks for sharing!

Comment by sallylwess on Tuesday

Sas Holland, If I still had my hair like I did even two years ago, I would have seriously investigated having some of it cut off and made into a topper.  I had no idea about how much I would lose in a short amount of time, nor did I investigate the idea of toppers or wigs.  If you have the hair, see if you can have a topper made.  It will be an excellent decision.  I keep telling my daughter that I will pay her top dollar for her hair because it is so much like mine was.  Also, I do know that you need a lot of hair to make a wig, not sure about a topper.  When another daughter died five years ago, before I knew I had FFA, she had such beautiful curly hair, I asked if we could cut her hair and donate it.  I was told by the mortuary that they have to have at least five inches.  She had recently cut her hair, just before her death, to a shorter bob, not super short, but evidently too short to be enough for a wig.  

Comment by sallylwess on Tuesday

Thank you Sad in chicago, and Sas Holland.  I agree with you about the topper.  I bought the first thing I tried on even as I knew I had misgivings.  I was just so grateful to have hair I was emotional and crying.  Never buy a wig or topper if those emotions overshadow the realities of the way the topper really works for you.  I have gone back and said it wasn't working for me and pretty much dismissed.  I was basically told I just didn't work with it right.  I think they only are interested in selling what they have on hand at this particular shop.  

Comment by Sad in chicago on Monday

sallywess - yes the topper (if real hair) can be styled; I "set" mine with velcro rollers to add height and volume (just the way I used to with my real hair).  The wig shop should find a topper that matches your own hair, color, texture, and style.  And, then they should shape it and style it to blend with yours.  I would bring it back and ask for either a refund, or someone there to fix, or do a better job of providing you with service.

Comment by Sas Holland on Monday

Sallylwess, I have the same problem that I have curly hair and cannot find toppers that are curly (other than black curly hair). That's why I don't have one yet. I can still go without one, no-one notices, but I have  a harder time nowadays making my fringe look good. I never have had straight hair in my life, so I do not want to straighten it  to match  a straight topper. I am now thinking of letting maybe my own hair grow long so that it can be made into a topper/fringe. But I have no idea if there is a company who would do that.

Comment by Brenda, IL US on Monday
Sad in Chicago I'm 260 miles south of J. Krause. I will check this out. Thank you!
 

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