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: 602
Latest Activity: Jul 14

Discussion Forum

CARF Conference 2018 Notes

Started by CurlyK. Last reply by kevinsstelly Jul 14. 32 Replies

CARF 2018 Conference Notes:First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.The CARF staff and volunteers are…Continue

Botox and FFA

Started by 2Dachshunds. Last reply by Shawnaynay Jul 8, 2023. 18 Replies

Hi Everyone: I remember there is a women on here who connected Botox to FFA. I was given the article, Frontal Alopecia after Repeated BotulinumToxin Type A Injections for Forehead Wrinkles:An Underestimated Entity?Antonino Di Pietro a Bianca Maria…Continue

Tags: Botox, FFA

Trying a new approach with CBD oil...

Started by Robin. Last reply by anettemandell Apr 20, 2023. 31 Replies

Hello All, I am venturing into new territory. It just dawned on me that a good experiment would be to try a medical grade CBD oil tincture on my hairline and see if it affects the redness. CBD is the nonpsychoactive part of marijuana that is being…Continue

Man with FFA. New member.

Started by Thomas. Last reply by Thomas Nov 23, 2022. 27 Replies

Hello,Thought I’d share my experience, as one of the few men with FFA, in the hope that it will be useful to others. It’s possible that the condition progresses and responds differently in men. I’m 40, live in London and otherwise healthy.I first…Continue

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Comment by Sad in chicago on May 9, 2018 at 11:33pm

Got the wig. Easier?  Yes. Less self conscious?  Not really. Much lighter weight than pieces, but styling not the same and even though a fortune I feel wiggy and stupid. Like everyone is looking at me. But, again, although takes getting used to — like a band around your head—it is more comfortable. Just always disappointed. No matter what you try there is a downside. Hoping I get used to the look and enjoy the ease. Stay tuned. 

Comment by AnnieMay on May 9, 2018 at 11:18pm

Sorry. .I'm trying so hard to deal with this and I apologize because I sound so negative sometimes but I hope it's ok if I just need to vent once in awhile here.

My nephew has been struggling with going bald and he decided to shave his head. I went to a family gathering tonight and he looks great. Everyone was complimenting him about how great he looked. I can't even imagine the same scenario with me. A low point for me. I've NEVER ever felt more unattractive, more self conscious, and more insecure now and in the future. . .

Comment by illustr8r on May 8, 2018 at 12:28pm

I found this, Tomato allergy eczema. ... However, tomatoes (along with nuts) are considered irritants to those with eczema. Symptoms of allergy-related eczema will typically occur immediately following exposure to the allergen and may include recurrent rashes, severe itching, swelling, and redness.”

@Plf I agree it’s probably autoimmune related. I went to bed after writing that post last night with a swollen tongue and red face. It’s all better this morning. So strange. 

Comment by Halfbakedwho on May 8, 2018 at 10:30am

Joy, you are very lucky. Illust8r that sucks about the tomatoes. Jules thank you (and Wyobalance) for the explanations. 

When I first got this - or let's say first noticed it- I really didn't worry at all. I figured it would just stop, or grow back, or it was "nothing". My husband has Alopecia Areata and it looked nothing like his issues. 

I wish that "managing my stress" would help. I wish anything would help. 

Bubbalu I want to look into your eyebrow stuff too...

Sad in Chicago...I hope that I will get used to camouflage - I really do. But I hear you- having a thing on your head all the time is a "thing" that you feel. 

Boy, I wish I could go to the conference!! Do you think there will be t-shirts???  

Comment by BubbaLu on May 8, 2018 at 10:24am

Joy, it is encouraging to hear from someone in remission!   Gives me hope.   I had steroid shots 10 days ago , however, I don’t see any change in thebumps or redness along my hairline.  Apparently it takes up to 5-6 weeks for the shots to finish the job.  

Comment by Joy on May 8, 2018 at 9:47am

Wanted to let cubbiebku know wine has not adversely affected me in any way - after 6 years I am in remission and have lost very little hair since the onset - have a patch gone behind my left ear which is where it started and the band around my face - just had my derm appt - I chose to do no meds - I think managing our stress calms down whatever in our scalp has caused this - I have had tinnitutis on that side as well which also has become very quiet - I gave had some ear sensitivity which I find interesting as well as so many have spoken if that - it would be interesting to know if it had always occurred on the side with the most loss - obviously all those nerves are connected 

Comment by Joy on May 8, 2018 at 9:42am

Comment by Sad in chicago on May 8, 2018 at 7:58am

I am with Jules. Mine is classic as they come FFA all the way. The loss I had become very extreme, a completely circular band with probably 4-5 inches of loss in front and a little less but still huge around my ears and now going up. My nape is starting too. And no pustules for me but my scalp itches like crazy and all my pieces itch like crazy as my scalp always was itchy from day one of this. Complete loss of brows now tattooed and all facial, arm and leg hair gone. I sleep very well too but I think it is because I am depressed. I never exercise any more (except for some walking as I have a dog) and have gained weight too. I cannot believe what a freak I am. I stayed with my grandchildren over the weekend and actually slept with my piece (so uncomfortable) so as not to frighten them. Hate this more than anything. I cannot reconcile at all. 

And listen, I know it’s tempting but don’t drink too much.

also getting my wig styled tonite. Hoping it doesn’t itch too much. I have been playing with it. Thought it would be more comfortable. Might look ok but nothing, nothing, nothing that you do for Camoflauge feels right, ever!!!! Beyond!

Comment by Plf on May 8, 2018 at 4:29am

Hi illustr8r, that sucks... tomatoes are the basis to a lot of my diet..just grasping at straws but a friend of .y has rheumatoid arthritis ( another auto immune disordeR) .if she avoids night shades she is fine...eggplant, tomato es, capiscum)..wonder if it is related.its relentless this FFA, hope you find d an answer, 

Comment by illustr8r on May 8, 2018 at 3:25am

OK-new weirdness. I think I’ve developed an allergy to tomatoes. I’ve been tracking it for weeks now. Pizza sauce or marinade- I don’t eat tomatoes often because they aren’t kidney friendly but ya have to have pasta sometimes. About 5 minutes after eating, I develop a slightly swollen tongue with swollen bumps/lesions on both sides and it stings. My face gets really blotchy and the outer corners of my eyebrows hurt and they breakout in a red rash. 

WTH is this?!? Anyone suddenly develop an allergy that you’ve never had before FFA?

 

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