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 Annie on August 6, 2013 at 11:00am

Terry, I color my hair & use a generic version of Rogaine. You should not have Rogaine on your scalp when you color your hair or use it for 24 hours after, probably to avoid irritation. I found this information on the leaflet in the Rogaine box. Skipping a few applications shouldn't affect the results.

Comment by April on August 2, 2013 at 4:17pm

Rita, I have been grain free the past month, except for one time I had some rice. I think I feel better without it for now, so I will stay grain free for the time being.

Comment by Rita - Canada on August 2, 2013 at 3:29pm

Thanks April so do you strictly abide by the no grains which I think is the most difficult part of the whole Paleo approach?

Comment by April on August 2, 2013 at 2:59pm

Rita, I am currently eating a Paleo type diet. I am kind of doing a combo of Paleo and Specific Carbohydrate diet. I am doing this to try and clear up some other issues I have been having, but also hoping maybe it will have some effect on the FFA? I have been doing it for about a month now. I have been on a gluten free diet for 7 years so going Paleo was not a huge stretch for me, but it is definitely hard. You have to cook EVERYTHING you eat, which I hate, but it can be done. It really is more of a lifestyle than a diet. There is a book and website called Elana's Pantry which is full of great recipes including muffins, breads, and even bagels! I am not a doctor, just someone who is suffering from multiple food intolerances and immune issues, but I really think so many things are related to diet. I'm not sure if the diet is helping the hair loss, but it seems it may have reduced the itching I experience a bit. Also I have lost about 8 lbs. without really trying which is great! I agree that Dr. Weil's diet conflicts with the Paleo diet, yet both are supposed to reduce inflammation. What it really comes down to, I think, is that if you are having any food intolerances or sensitivities you need to eliminate those foods to improve your health. The Paleo diet approach eliminates a lot of the most common food offenders, i.e. grains, dairy, soy, etc., so it seems to be a good place to start for many people. There are some good books that can help you get started. Dr. Loren Cordain is the founder of the diet and has some good books. I can't say I follow any one diet exactly, but just do what works for me. Listen to your body most of all. Good luck!

Comment by Heidi Short UK on August 1, 2013 at 5:56pm

Hi everyone I haven't been on for a while! I stopped it coming through to my emails as there are so many on the website it was flooding my inbox! I hope everyone is well and enjoying this lovely weather, I wish every summer was like this.

Comment by Brenda, IL US on August 1, 2013 at 3:11pm

Hi Terry-I have my roots colored by an excellent hairdresser. My doctor says it doesnt hurt the FFA treatment. I use minoxidil 5% and it doesnt affect the color. Hope this helps.

Comment by Debs on August 1, 2013 at 1:36pm

Rita, I have compared Dr Weil, Dr Fuhrman and the Joe Cross diet plans (however he used Dr Fuhrman to monitor his juice fasting) and the info on the CARF website... this all pretty much follows the same guidelines. I have not compared the paleo diet with it but basically I think if we eat food as it grows naturally and don't process it that is pretty much all we can do. I wish the medical community would experiment more with diets for all medical condtions so we could get really precise info. I am eating rice and quinoa as my grains and some gluten free oats for breakfast. Good luck Rita, this is very challenging. XXXX

Comment by Rita - Canada on August 1, 2013 at 8:18am

Debs-It is so confusing when for instance,Dr.Weil restricts certain foods for his anti-inflammatory diet while the Paleo Diet which touts anti-inflammatory approach as well, retricts a whole host of different foods which is claimed to cause inflammation. My naturpath had told me the Paleo approach is best. I am failing miserably as NO Grains are allowed. It seems while I have company staying with me, I cannot follow anything. Has anyone tried & stuck with the Paleo approach.?

Comment by Debs on August 1, 2013 at 3:33am

Liz, good luck with your wig buying, it is a big boost to your confidence to find a solution to stabalising our changing appearance and getting back to recognising oneself when you look in the mirror.

I will get a copy of the anti-inflammatory diet book too. Fab xxx

Comment by Brenda, IL US on August 1, 2013 at 12:11am

Hi Ladies-saw my derm. yesterday because the clobetasol solution was causing facial acne and a worsening rash on my scalp. I'm now using Desonate gel which is helping with the inflammation and itching. She injected the top of my forehead and eyebrows again. I was surprised because it had only been two and a half weeks since the last injections. She advised against getting my eyebrows done because she thinks they'll grow back. She said i can use 5% Rogaine once a day. I've started turmeric and resveratrol. Still taking Plaquenil twice a day. I go back to see her August 20. Her name is Dr. Musiek. She is located at the Center for Advanced Medicine Washington University in St. Louis, MO.
I've tried Smart Brow but don't have the hang of it yet. Need makeup 101 along with computer 101!

 

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