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Recent research into ffa and environmental factors

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Flic View Drop Down
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Joined: 17/April/2014
Location: United Kingdom
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Post Options Post Options   Quote Flic Quote  Post ReplyReply Direct Link To This Post Topic: Recent research into ffa and environmental factors
    Posted: 07/September/2015 at 8:08pm
Hi all. At my last consultation with Dr. Champagne in Oxford, she mentioned research into the possibility of environmental factors causing ffa (ef. Type of shampoo). Apparently the results showed that environmental factors are not the cause.

Has anyone seen this research document?.   I am keen to know what was on the list of possible environmental factors. I'm trying to go through everything that's happened in the last few years and apart from stress, I was wondering if it could be triggered by vaccines.   Prior to getting ffa i went to the states and cuba and pretty sure I had some vaccines.   I have asked my doctor for a list of vaccines ive had in the last 10 years.   I have no idea if vaccines were included in Dr Champagnes research though.

Would love to know what others think of this.
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Pavla View Drop Down
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Joined: 15/June/2014
Location: Newcastle
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Post Options Post Options   Quote Pavla Quote  Post ReplyReply Direct Link To This Post Posted: 08/September/2015 at 8:38pm
I've never had vaccines since I was in my twenties (I'm now 51 and diagnosed with FFA last year).  I honestly think it was stress related with me.  Lost both my parents within a few weeks of each other, one of my brothers was then diagnosed with cancer and he went through horrendous treatment but fortunately is still with us.  Just got over that and my other brother developed cancer and died six months later.  It was shortly after receiving the news of my second's brothers diagnosis that I started to notice a receeding hairline.  When I mentioned it to my hairdresser she had noticed it too but just put it down to the stressful situation I'd been through.  

Dr. Christos Tziotzios (at Guys) is currently undertaking research into FFA.  Just read an article from him in the Journal of American Dermatology where he states that they have discovered familial FFA in quite a few families.  There isn't such a link in my family.  The consultant I'm under will be joining in Dr. Tziotzios' research shortly so I'll be partaking in it but anyone can get in touch with him and either visit him in London or there may be someone at a local hospital/university who is involved with the research study.


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Flic View Drop Down
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Joined: 17/April/2014
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Post Options Post Options   Quote Flic Quote  Post ReplyReply Direct Link To This Post Posted: 09/September/2015 at 10:52am
Thanks for responding Pavla and sorry to hear you've had such a stressful time.   I also had a stressful period before diagnosis, but nowhere near as bad as yours :(  and like you, there is no ffa in my family.

I'm aware of Dr Tziotzios' research and I think the Oxford dermatologists will be including their patients in due course but they don't appear to be in much of a hurry - I contacted Dr Tziotzios last year to see if I could take part.  

I wonder how many ffa sufferers there are on this site?  I would be quite keen to do some sort of survey/table to see if there are any common factors amongst members on this site.

I wonder if the admin person on this site could contact me to see if this would be possible.
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Dyners View Drop Down
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Joined: 20/September/2015
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Post Options Post Options   Quote Dyners Quote  Post ReplyReply Direct Link To This Post Posted: 24/September/2015 at 3:54pm
Hi Flic! That sounds like a great idea. Would love to compare possible causes to see if there's a link. My dermatologist said definitely not hereditary or contagious. My mother in law has it too and the girl I car share with has the variant lichen planus giving her mouth ulcers. I don't feel I've had any stress and no sign of menapause yet( unless this is it). I do dye my hair and had changed to permanent rather than semi in the 6mths before symptoms. Prob more freq application too. The only other long issue I've had was a dental prob with a difficult root canal infection lasting a couple of years. None of my blood relations have any issues. I'm never sick. Thought I had a super human immune system till now!
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Flic View Drop Down
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Post Options Post Options   Quote Flic Quote  Post ReplyReply Direct Link To This Post Posted: 24/September/2015 at 6:59pm
HI Dyners.  How about we each think of a list of possible causes.  Then we can work out how we go about contacting all other ffa sufferers on this site.

Some factors I was thinking of : mobile phone usage (I have definitely used mobiles more in the last 5 years or so.  Before then I had a brick phone), wifi in the home (wireless in the last few years), vaccines (had some about 5 years ago), parasites (went to a naturopath who said I had parasites in my system and should avoid yeast), toxic overload (this might seem crazy but I ate a huge bag of Jolly Ranchers in one go and not long after got severe itching in my hands and chest for some time), stress, medications, diet etc.  These are just a few of the ideas I've had.

Until this diagnosis, like you I have been relatively healthy and I have highlighted my hair for 30 years.

Could you maybe think of anything that you've done differently since you were diagnosed that may have triggered a reaction.
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Dyners View Drop Down
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Joined: 20/September/2015
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Post Options Post Options   Quote Dyners Quote  Post ReplyReply Direct Link To This Post Posted: 27/September/2015 at 3:34pm
Hi Flic! Mobile phone usage definitely has gone up. Not for calls though. Texting, games & Facebook are to blame. Wifi at home & at work switched on continuously. No Vaccines , but a long standing issue with a tooth/gum infection. This would certainly also stimulate the immune system. Timing would be right as I've been trying to sort for several months before symptoms noticed. Had several small abscesses & needed antibiotics on a couple of occasions. Also have had a brace & now retainer. I also have no hairs on my lower legs & eyebrow thinning which I noticed before my hair. The last stressful time was a car accident 7 years before symptoms so probably too far out. Fell off a horse a few times within 3mths shortly before symptoms. No major injuries(given that up now). I do drive a diesel for 50miles every day. Do remember something smelly leaking into car for a couple of weeks before I got it sorted. Kept the window sl open. Think that was before symptoms but need to find receipts. Stung by a wasp a short while before symptoms. I've taken multi vitamins for about 2yrs before symptoms. I do drink a lot of fruit juice which is a change from 3yrs ago. Oh and I got a dog about a year before symptoms (please don't let it be the dog!) Apart from dental nothing stands out. No allergic reactions that I remember, but will keep thinking. My mother in law can't remember anything unusual as her condition is long standing but says it's stopped now, since she's been using Natur Vital shampoo. Either that or it's just burnt out naturally.
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SarahB16 View Drop Down
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Post Options Post Options   Quote SarahB16 Quote  Post ReplyReply Direct Link To This Post Posted: 28/September/2015 at 8:26pm
Hi,
I have FFA with lichen planopilaris, no other members of family have any form of alopecia. I also have under active thyroid. A few members of the support group I go to also have the same diagnosis and under active thyroid. Was recently talking to a trichologist who said that there is some thought that the mirena coil may be one of the causes, I have recently had mine removed. There seems to be more thought that there is definitely an environmental impact but no real idea what!! Am happy to take part in any research
Xx
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Seni View Drop Down
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Post Options Post Options   Quote Seni Quote  Post ReplyReply Direct Link To This Post Posted: 05/October/2015 at 1:37pm
Ladies please go to the CARF website, they are conducting research into all the scarring alopecias. Dr Vera Price in the USA was looking at environmental insults (dioxins) as possible triggers. Since FFA did not happen historically (first diagnosed in 1994 by Kossard) it means something in our modern world is a trigger/s combined with a genetic predisposition. Research is ongoing in the UK and USA but CARF is the best place to get info.
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JJ View Drop Down
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Joined: 11/November/2015
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Post Options Post Options   Quote JJ Quote  Post ReplyReply Direct Link To This Post Posted: 11/November/2015 at 3:10pm
I've looked on the CARF site but can not find a link to the survey you suggest. Could you provide any more details such as the web page?

Thank you
ps My dermatologist seems to think FFA may be caused by use of sunscreens and moisturisers. There is much evidence for this apparently.
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Marytee View Drop Down
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Post Options Post Options   Quote Marytee Quote  Post ReplyReply Direct Link To This Post Posted: 14/February/2016 at 1:04pm
Hello everyone


I had a regional specialist consultation last week, the consultant mentioned sunscreen as a possible trigger and not to use it. I didn't think too much about it until it dawned on me that all of the facial moisturisers and foundation I use have SPF in them. Has anyone else hard of this?

I will do some research and report back if I find anything

All the best to everyone Smile
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Chrissy70 View Drop Down
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Joined: 23/March/2016
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Post Options Post Options   Quote Chrissy70 Quote  Post ReplyReply Direct Link To This Post Posted: 26/March/2016 at 7:35am
Hi all I've only recently been diagnosed and my mum has it too, that's how I recognised the sighs. Not sure with me its sun cream or moisturisers. The hair from around my ears has gone. I have no eyebrows and hair on my arms and legs is rapidly disappearing. I've been prescribed hydroxychloroquine does anyone else take this?

Glad to know I'm not alone.
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willyH View Drop Down
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Post Options Post Options   Quote willyH Quote  Post ReplyReply Direct Link To This Post Posted: 25/May/2016 at 7:35am
Hi Chrissy, I was diagnosed over two years ago with FFA and Lichen pillanoris. My eyebrows fell out ( though there appears some slight regrowth), sideburns and beard. I am still losing hair at the front of my scalp. The condition appears to be rare in males. I put the cause of my condition down to stress, in particular raised Cortisol levels but have read nothing that might support this. At the time I had a very stressful job, to manage the stress I took up running and vigorous exercise. At the age of 50 this was, perhaps, not a good idea as I experienced a very painful itchy scalp, and suffered acne to boot which was treated with isotretin, a hideous drug which can also cause hair loss. The acne has now cleared leaving me with Rosecea which is being treated with laser (at my own expense) for the FFA and lp I have been treated with Quinoric 200 mg, betnovate and protopic, the latter I used very irregularly as it is so greasy. I have to say meditation helped me manage my stress levels and, I believe, slowed down the rate of hair loss. I also took up yoga. Now retired my stress levels are much less but I know it's only a matter of time before I shave my head completely, though I not ready for that just yet. I'd love to hear from any other sufferers of FFA, particularly males as I'm told there are so few of us. It would also be interesting to hear of anything other suffered have tried that has had a positive effect.
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