Replies to This Discussion

Permalink Reply by Nerida on July 14, 2016 at 7:50am

Thanks. Great info. Yep I've got a super bump on my forehead and I'd agree that it runs in families. Mum and I both have FFA. Sunscreen is an interesting point. I have pastey white skin and sunscreen allergies. I use ultrasuitials matifying sunscreen because it is meant to have a lower chemical load than many sunscreens. And it is the only sunscreen I'm not allergic to that I can find. it would make sense that problems are more likely to be with chemical sunscreens as these are readily absorbed into the skin and although physical sunscreens (zinc or tantaium dioxide) are absorbed into the skin it is not to the same extent as a chemical based sunscreen. An interesting point is that chemical sunscreens work by a chemical reaction between the uv Rays and the chemicals in the sunscreen which at first is occurring on the surface of the skin but as the sunscreen absorbs deeper into the skin the chemical reaction is occurring deeper. This reaction causes the production of free radicles (the bad guys that alter your cells and can give you cancer). That's why they tell you to reapply after 2 hrs so that you are putting another layer of sunscreen on so the chemical reaction is occurring on the surface layer again and not deeper down. If you can reapply get out of the sun. Is there a chance that the chemical reaction from the
Sunscreen is damaging the cells in a unique way that says "hey I'm going to be a freaky cells now that makes your hair fall out." ? Fascinating. Can't wait
For info on diet/nutrition.

Permalink Reply by Ana_Brazil on July 14, 2016 at 1:05pm

Hello!

Yes, I am concern about sunscreen now, related or not to the FFA.

I wonder, as I never used it before, I am using now that I am in Brazil, and since I have been loosing her for over 10 years... I don't think it is related. I actually never put anything on my skin, I think I am more of a "tomboy", since I am the only girl in the family.

I believe that once you have the inflammation, our skin is sensitive, and it will be sensitive to any product. I was thinking they are saying this because sunscreen is what we use these days everyday in our skin. Did they have any specific scientific response?

Unfortunately, after my stressful separation I wanted to feel better about myself, and started to use many different products on my skin, and did lots of stuff with my hair for many years, which I had never done before, and I truly believe it open a door for my immune system to attack a fragile area, and not saying it is the least, but it was my hair and not another organ.

I did a treatment with corticoid topic and oral (very light on the oral) and also some local treatment with infrared light, and quantic therapy, and this one really helped me. It is a therapy based on Quantum physic (I know this is far out, but Quantum physic is far out), and it involves around our brain and how powerful we actually are to make our own reality. That made a huge diference in my life overall, I started to believe I could do things, I could get things, and I did!

I think medication is importante, and it will work, if we BELIEVE it will work. That is the hardest part, to believe we have this power! Sorry I might start to sound a bit nuts =8)

When you are in a situation when doctors cannot do much to help, they turn us to anything we believe, so this is what I am doing.

Yes, I have changed my nutrition, my life style, and everything counts.

Permalink Reply by DW on July 14, 2016 at 4:19pm

Ana, you are not crazy, the mind is a very powerful tool. Attitude plays a huge part in fighting many diseases!

Permalink Reply by Isabel on July 15, 2016 at 5:40pm

Hi Ana,

I also don't think sunscreens have any relation to triggering FFA. What I think is happening is that those of us that develop this condition are more susceptible to multiple skin issues that we didn't use to have (hyperpigmentation, face redness, etc.) and those situations drive us to increase the use of sunscreens and thus the scientific conclusion (in at least one study) that there is a greater prevalence of sunscreen use in FFA afflicted people. So what I think is that this isn't really a cause, but rather a result.

In my personal case I only ever manifested skin issues (hyperpigmentation in the forearms and back) about two years prior to actually triggering my FFA. This also coincided with the loss of part of my eyebrows.

Maybe the current studies will shed more light on this relation or the lack of it.

I agree with you that the positive attitude is extremely important in stopping the disease in its tracks and I think it necessary for us to avoid stressful situations so as not to further debilitate our immune system.

Permalink Reply by Isabel on July 15, 2016 at 5:45pm

Hi Nerida, I also launched a thread a while back asking for what we think triggered our FFA's when there are multiple of us afflicted by it in the same family (I'm the third case in my family). As you and your mother are both sufferers, did your conditions manifest simultaneously? What do you think triggered it? How old were you both at the onset of your FFA?

Permalink Reply by Nerida on July 16, 2016 at 2:36am

I'm 37 and mine had moto able started 5-6yrs ago but I think it may have started a couple of years earlier and I hadn't really noticed. It was also around the time I had a serious car auccident and also when my second child was born. I believe that stress played a huge roll. I have all three forms of LPP (FFA, graham little, pano pilaris). I had a immune issues to start with so I wasn't surprised to get it. Mum on the other hand does not share my autoimmune problems but we do share the FFA (she hasn't been tested but I'd say she has all 3 forms of LLP as well) mum thinks hers could have been triggered by hormone changes but maybe it was stress. I think mums started 15yrs ago (correct me if I'm wrong mum) I'm guessing she was around 53 when it started. So around 8yrs ago for me (29) and 15 for mum (53). I was 29 when I had my first child and didn't notice anything but I do believe it would have started a couple of years before I would have noticed. I'm really leaning towards hormones and or stress. Mums is more advanced on her head than me. But taking plaquenil and using novasone lotion, she isn't.

Permalink Reply by Anne55 on July 21, 2016 at 9:16pm

Hello All!

I have recently joined the forum and already I love all the information. Ten years ago I started having what looked like male pattern hair loss at my temples. This happened at 45 when menopause started for me. The hair loss progressed, but in 2013 my bangs started receeding. I went to the dermatologist and he suspected FFA. I do not have any redness, just forehead hair loss, eyebrow loss and less body hair. I didn't want to test at that time, but wish I had of. This year my hair line is disappearing quickly. The doctor took a biopsy and it very positive it will come back FFA (plus the beginnings of alopecia on the top).

She prescribed Finasteride 1 mg. does that sound like a low does? Curious what types of does others are taking.
Does anyone know if candida has any affect on FFA?
I also tested as having gluten interference so I try to eat as paleo as possible( difficult since I am 5'7" and only 112 lbs)

I have been so depressed and feel awful, it's hard when you don't want to leave the house because your baldness shows. I did just buy a topper, and need to get my nerve up to start wearing it. I do use dermmatch which helps and 6 months ago started taking Saw Palmetto which seems to stop some overall loss on the top.

Anne55

Permalink Reply by GEMINIJEANNE on August 30, 2016 at 5:57pm

thank you Stephanie for sharing this information with us . I visited Dr. Donovan a year and half ago - he took pictures and prescribed medication and salve for me which since has been changed by my dermatologist. I would like to say that I'm confident with my dermatologist but I'm not . She just fluffs off the info I give her from the website and says I shouldn't believe any of it - doesn't really want to listen at all. It's so frustrating when I know there is more I could be doing if she would investigate the disease. Anyway , thanks again for all the info and hope at least some of us see some positive outcomes. 

Permalink Reply by DeniseC on February 21, 2017 at 4:36pm

Oh dear - poor you. I really feel for you. It is all so very random, it seems to me.

One thing your dermatologist is missing, I think, is the fact that using sunscreen is not the only way of avoiding the damage caused by the sun. There is the, perhaps basic, but still effective, measure of keeping the skin out of the sun in the first place. So that is what I am doing now.

Sunscreen wasn't the main issue for me, in fact - it was/is moisturiser. I used to carefully select a daytime one with SPF. Now I make my own, using a recipe from someone who creates skin products using entirely natural ingredients. It seems to work, and it has no chemicals at all.

As for the remission, I know precisely what you feel. I bit the bullet one year ago and got an Intralace system from Lucinda Ellory. Not cheap, but it stopped me feeling such a disaster - I felt more or less back to normal about the way I look. And then I went back recently as the whole thing was not right - it just felt, and to me, at least, looked, wrong. So then I discovered the hair loss had not stopped - I had lost yet more over the year, hence the problems.

Silly, really, as I have no idea logically why I believed (hoped?) the loss had stopped. It has been so very slow, but of course having something very definitive to measure against - the intralace - showed it was still progressing.

It's very depressing. At times, I just wish I could get rid of my whole head of hair rather than have nice thick hair which is ever-receding backwards. But then I would look like an ancient crone. Far too old for the attractive bald look!

FFA is stupid and it is cruel. Mostly, I am okay about it: I cope. And I know there are far worse things that could have happened to me. But there are days - and today is one of them - where I just wish it would all bloody well go away!

Permalink Reply by sallylwess on February 21, 2017 at 7:44pm

http://onlinelibrary.wiley.com/doi/10.1111/bjd.14535/abstract
Here is the research. It is a personal decision on whether or not to use sunscreens. I used them in leave on moisturizers for years, now I no longer use products mass produced with chemicals in them on my skin. I wear hats when I am outside, or I use zinc oxide based sunscreens. Dr. Donovan just posted on this topic today. I don't think we have enough evidence to prove sunscreens are to blamed for our conditions, but I don't think we can reject the evidence that they are suspect either.

Permalink Reply by DeniseC on February 22, 2017 at 3:18am

Totally agree - I am not prepared to take the risk, especially when there are other things I can do.

Permalink Reply by SJC on February 24, 2017 at 11:46pm

Regarding sunscreens and the discussion that took place at the conference, we have to keep in mind that the cosmetics and cosmeceutical industry's  manufacture of products with nano particles is what was thought to be an issue.  The industry's design intended them to sink very deeply into the skin.  

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