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: 323
Latest Activity: 25 minutes ago

Discussion Forum

3 FFA cases in one family

Started by Isabel. Last reply by Isabel 25 minutes ago. 11 Replies

I come from a family where there are 3 FFA cases: 2 female (myself included) and 1 male.I was diagnosed in 2013, at age 42, though I had had some loss of eyebrows since I was 40.This year, in February, my mother was also diagnosed, at 82 years old.…Continue

Recently diagnosed in Kansas

Started by AReg. Last reply by AReg 9 hours ago. 11 Replies

Recently diagnosed with FFA, first visit after diagnosis is Thursday, May 12.  My scalp is extremely itchy all over including the crown and the back and along the back hairline.  Is this typical?  Does it mean my hair will fall out in those areas…Continue

Excimer Laser Treatment

Started by Dragon&Fox. Last reply by Wyobalance 20 hours ago. 3 Replies

Anyone have this?Continue

Recently diagnosed - Portugal

Started by Tania. Last reply by Isabel May 17. 3 Replies

Hello, since my thirties my skin has been acting strangely, some little postules appeared and I was with acne scars (I never had acne).All the dermatologists said it was a reaction to face creams...I always suspect medical opinions so I went to find…Continue

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Comment by Isabel 27 minutes ago
DeniseC, can you tell me what the symptons were for the lichen planus in your throat? And what kind of exams did you have to diagnose it? I ask because my mother has been having throat issues for a while, now, and noone has diagnosed it so far. I'm beginning to suspect this may be her issue.

In the meantime, have you had any treatment for it, and if so, did you get better?
Comment by Wyobalance on Wednesday

Have those that are in FFA remission (or hopefully resolved), had a biopsy initially for diagnosis, and another biopsy confirming remission/resolution?  

I've lived "clean" most of my life (or more so than the average person, mostly organic, avoided toxins when possible), and still got FFA  (have used sunscreen).   I am excited for the study in the UK looking at genetics.

I did a very short trial of doxy & actos meds about 5 years ago = side effects.  No meds since.  Have lasered for a year.  My loss is slow, but continues. 

The question do docs in the US and UK treat FFA the same.  I expect so.  Carf is an international organization, so the docs collaborate.  

Yep, this is a difficult journey for us all, but hooray for those that no longer have hair loss!  

Comment by Kikibob on Wednesday

Thanks for all the recent posts encouraging those taking a natural approach to combating this disease.  I am trying this too because I had early stage breast cancer and will not do any hormonal type of treatment such as Finasteride.  For me, the risks of the drugs currently used outweigh (what I see as) the low results most people report.  I did try Clobetasol foam for a time but it irritated my scalp, caused tenderness and dry mouth.  I still occasionally dab it on active areas. However, I am focusing on eating an anti-inflammatory diet (Dr. Weil's), am taking turmeric and vitamins, seeing an eastern medicine practitioner for acupuncture and Chinese herbs, trying to learn to meditate and exercising more.  The lifestyle changes have really been pretty easy because the hair loss is so motivating.  I was diagnosed in February and started all of this soon after.  I believe I am starting to see an abatement in hair loss.  I realize this could just be cyclical and not lasting, but I am hopeful and wanted the thank those of you who posted the encouraging words for natural approaches to controlling FFA.

Comment by DeniseC on Wednesday

Hi Carol

I don't have any scarring at all. I have never had redness or anything - all I have had is hair loss. But I have been told emphatically that there is no chance of the hair regrowing. The follicle has been killed off and there is nothing to be done about that.

I was also told it was due to inflammation. In my case, I was diagnosed years ago with lichen planus, which is a chronic auto-immune skin condition. I had it primarily in my mouth and throat - horrible. And there is a link between FFA and lichen planus, so it is pretty clear to me that my hair loss is due to that.

I take krill oil, for the inflammation, and Immiflex, to boost my immune system.

And positivity helps enormously, I am sure.

Denise

Comment by CarolJ on Wednesday

Hello everyone,

I was diagnosed back in February and just went for a 3 month check. The doctor was checking the inflammation and keratosis that was present when he diagnosed me. He said there were only a few areas where it looked like there was some redness. The one thing that I took away from this appointment was that the inflammation is what causes the hair follicles to scar over. So to keep that from happening you need to control the inflammation and hopefully get it to go away completely. Then (I would guess) even if you have hair loss, where those hair follicles aren't scarred you could have hair grow back. I have not taken any medications (internally) have used clobetisol topically for the first month or so and have just completely changed my diet and am taking different vitamins and supplements that are known for decreasing systemic inflammation.  Only being 3 months into this I can't really tell if I still have hairloss, I had been loosing it very slowly for probably the past 2-3 years... but I do feel great and am keeping a positive attitude. Thank you all for posting...I don't feel so alone!

Carol

Comment by Mike'sDeb on Sunday
Good Morning Ladies,
I have commented a few times in the past about my FFA journey and after reading Joy and Denise's comments I thought share an update. I had a dermatology appt the other day - it's now been 2 yrs since my diagnosis (but we think my disease process was within the 18mos or so prior to that). I too have opted for the natural approach - healthy lifestyle, no meds. I continue to appear to have no active disease - no redness, inflammation, itchiness or further hair loss. I seem to have stabilized at a little less than an inch at my forehead and a little over an inch by my ears. I have also have sparse eyebrows. So little is known about this disease that I just was not willing to subject myself to the side effects of meds especially since I cannot re-grow hair lost and there is no guarantee of stopping the disease. At this point I am grateful I have so much "other" hair that I (and my wonderful hairstylist) can conceal my loss and I hope that this has truly "stopped"...but who knows...no guarantee there either. Healthy eating, living and regular exercise has helped me in so many ways and I am appreciative of that. It also helps with keeping my emotions and diagnosed anxiety in check. I try to enjoy all the good things and people in my life and help others which in turn makes me feel better about myself and where I am in this life.
I too wish you all wellness and peace!
Deb
Comment by DeniseC on Sunday

Hi Joy

I, too, have not taken any medication for the FFA, primarily because a diagnosis did not come for a very long time and I was told there was nothing I could do. I was also (erroneously) told it was my age (I was 63). However, I then went to a highly reputable integrated medical practitioner (he is medically trained, but realised early on in his career that mainstream medicine treats symptoms not causes much of the time, and to make a difference you have to look at the whole person, not the component parts). And he prescribed all sorts of goodies from Immiflex to boost my immune system, krill oil to reduce inflammation, various vitamins and minerals and so on.

Since then, I think the hair loss has stopped. It's difficult to say, as it has been so very insidious. I have also had an intralace system fitted (Lucinda Ellory Clinic - HIGHLY recommended), so feel better about it all in general.

I try to eat sensibly - but that isn't because of the FFA. I believe I need to do that anyway. And I don't use loads of chemicals on my skin - never have done (so the theory relating to sunscreen certainly doesn't apply to me).

For me, meds are not the answer and I feel I am doing okay without them.

But - if right at the start I had been told to take this or take that, would I have done, just for the chance of it all stopping? Probably. It was/is such a devastating diagnosis that at the time I would pretty well have done anything to stop it.

And I think most people are like that. They may be grasping at straws, but if that is all they think there is to grasp at, they will go hell for leather, especially as, for most of us, we have never heard of FFA, so rely on so-called experts.

I would be interested to know if there is a difference in approach by those 'experts' in the UK and USA. I certainly was told nothing could be done (I live in the UK), yet time after time on this site, I read about people who have been told drugs will at least stop the hair loss. So is this a UK/US difference? Or are people living in the UK prescribed the same drugs?

I think the most important thing for people to do is to do something. The feeling of being out of control of something that is so personally challenging is, I believe, one of the worst aspects of FFA. So if that something entails putting your trust in an expert who prescribes drugs, and you trust that expert, go with it.

But .... take control in other ways, too. As you say, Joy, eat sensibly, take supplements, look after yourself. And look after yourself emotionally as well as physically. As I have written several times on this site, FFA is an unfortunate condition to have - but it's just bad luck, nothing more. It doesn't make you less of a woman which is emphatically what I felt for a very long time. Find your own solutions - I hugely recommend the intralace system, but it isn't cheap and entails ongoing costs presumably for the rest of your life. But there are others - including, as one fantastic young woman posted recently, shaving off your head and going proudly bald (too much for me as a now 65 year old - I would look either desperately ill or an ancient crone).

None of it is easy. None of it. But if we can't do anything about the hair loss, then we need to live with it as best we can without it dominating every single solitary thing we do.

Don't let it beat you!!!

As Joy says - wishing you wellness!

Denise

Comment by Joy on Sunday

I thought after reading some of the comments again that I would take the time to write a comment.  I take no meds as I do believe that my tipping point was all the various medications they gave me when I turned 65 but I also believe that there was something going on that let that happen.  I have actually read all the comments and have done almost everything that was suggested except for the drugs.  So I have changed my diet - 80 percent fruit and vegetable and primarily fresh - 20 percent protein - only bottled water - filter on my bath water to remove chlorine - natural chemicals in my hot tub - no fluoride in my toothpaste.  No face creams with retinol or spf only sunblock with zinc oxide.  Three years have passed since I had the medications - a pneumonia shot and a shingle shot and prolia for osteoporosis - I have taken milk thistle and some other vitamins which I really believe stopped my hair loss and after all this time those medications have finally cleared themselves out of my body as I have no more itching, sensation, hair loss or LLP - but this has all taken all of this time.  My amazement is that even though I have posted these results I continue to see so many of you with no results and so many of you continue to use the medications from the dermatologists that do not work.  The latest studies that have been posted on this site were about the skin creams - which I had used ROC and then Rodan and Fields which both lines have spf and retinol - great skin but my hair falling out and LLP are not a good trade off.  Passage of time will help many of you but if you do not stop using the creams and sunblock and make some vitamin and food changes you may continue the loss - is that worth it?  What do any of you have to lose by giving those things up?  In my book - absolutely nothing!  Most everyone on this site was already healthy and these things that I mentioned may not be all of the causes but they are at least a start.  Wishing you all wellness!

Comment by Jen on May 19, 2016 at 10:16pm

Thank you so much Celia. Thank everyone else for their participation.  I know that I am not alone. I have found a way to live with this for now.

Comment by SJC on May 19, 2016 at 10:09pm

Thank you Celia, for starting this site.  I don't contribute all that often, yet I have read and learned much here.

 

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