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2016 CARF Conference Information/Summary/Discussion
Hi All,
I'm back from the CARF conference and thought I'd get a post going to share what was learned/presented and start discussion about the same. I didn't get a chance to meet either Nancy or Sally from this group unfortunately. I'm sure each participant had unique "take aways" from the event and I hope they chime in when they are able. I took about 8 pages of notes while there, but will try to hit some of my highlights below.
General Info
- About 12 highly specialized and renowned doctors presented data and answered questions
- They were very passionate about CICAL's, helping their patients and educating patients and the medical/hair professional community about these diseases
Clinical Trials
- Data must be gathered to show prevalence of the CICAL's in order to get on the NIH's list for funding and thus clinical trials. What we see going on with various universities and doctors collecting patient information in an effort to build a database to show the NIH the prevalence of the disease. This is paramount in our plight to stop our hair loss.
FFA Presentation
- Dr. Tosti from Italy presented re: FFA. She sees this disease in Caucasians and in South Africa. It is rarely seen in Asians. It is seen running in families more often of late.
- In describing FFA symptoms a few I found interesting that are not usually mentioned: dark spots on facial skin that are thought to be melasma by most derms are due to FFA; redness on facial skin that is often diagnosed as Rosacea is due to FFA. Also more common: bumps on forehead, skin discoloration near scalp, rope-like veins at temples.
- Cosmetics may play a role in FFA, as well as sunscreen. When this statement was made a discussion ensued regarding sunscreen. Dr. Bergfeld from the Cleveland Clinic was very opinionated on the subject and stated - Wear a hat, not sunscreen - with new cosmetic technology microparticles in cosmetics and sunscreens are now absorbed into the skin (as opposed to laying on the skin prior to micoparticles) and are toxic. Bottom line: although the doc's didn't know for certain, they felt there was no reason for FFA patients to take further possible risk by wearing sunscreen. My take was this was especially the case for chemical sunscreens.
The Science of CICAL
- Dr. Jeff Donovan posted regarding the science behind why we have FFA (and other CICAL's)
- The top of the follicle is affected vs. the bulb as with AA.
- Both follicle stem cell and oil gland production are less prevalent in CICAL patients.
- He focused on oil glands as they see these lipids consistently genetically altered in CICAL patients. Stated these altered lipids aren't normal - they create inflammation and are toxic to the follicle.
- This led into a discussion about PPAR Gamma proteins - an important protein for growing and maintaining hair. In CICAL patients there are fewer PPAR Gamma proteins present and they don't know why. It may be environmental (medications, cosmetics, sunscreens), it may be genetic or even due to trauma.
- PPAR drugs, such as ACTOS, may work for patients by increasing PPAR Gamma proteins, yet not enough research has been done on this drug for alopecia. Donovan thought the drug may only be worthwhile in the short term when an early diagnosis has been given.
Okay, that's what I have time for at the moment. Will try to post again soon with the notes from the doctor Q&A which included: Diet and Nutrition, Hair and Nail Vitamins, Surgery, Retin A, Hair products and Medications. Hope at least some of this is helpful. Wish all of you could have been there as I think everyone benefited - so much beyond the discussion when meeting others in the same boat.
Stephanie
Replies to This Discussion
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Permalink Reply by Will Be Healed on
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Thank you so very much for providing us with a debrief of the conference. Since I have read this, I changed my foundation so that it doesn't include sunscreen. I do use cosmetics and plan to change to more organic ones to see if that may help. I too have the dark spots on my forehead (one reason why I wear foundation to cover it up) and I have always wondered if it was linked to FFA. I am wondering if there was any mention on other medications that we all tend to get prescribed, such as Plaquenil, and if they believe they can have a positive impact. I am also wondering if there was any mention to any success stories of either stopping the progression of hair loss or growth with any of their patients. It is encouraging to know there are doctors out there who care to uncover the cause and research this condition for our benefit.
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Hi
Just read all of this as just back from holiday.
Oh my goodness! I was convinced that sunscreen, etc., was absolutely nothing to do with my FFA (I have lichen planus, and was told it was directly linked to that). But having read all of this, I am now not so sure.
I don't use a lot of sunscreen and never have - but I do use it if necessary. And I have never had any problems with it.
However, what I have had was the rash on my forehead - a rash that was thought to be linked to lupus but wasn't. It was pretty horrible - red and flakey, itchy and sore. And it was at the same time as the lichen planus, although a completely different type of skin condition - around 15 years ago. I was hospitalised, as the lichen planus had hit my gut and was very painful. The consultants had no idea what was causing the pain in my gut (lichen planus in the gut was not widely recognised then), and could make no link with the rash. I felt strongly that everything was linked, though.
Eventually, the rash on my forehead, like the lichen planus, just went - but it was there for ages. And it was after that, that my hair loss started.
I also have developed other skin irritations, especially on my arms and hands - no idea if they are anything to do with anything at all, but I do wonder. If I carry a plastic bag over my arm, or a shopping basket (the ones in supermarkets) I immediately come out in bright red raised weals, that are very itchy. And I frequently get itchy legs at night. All of this has started over the past few years - nothing before that.
So here I am making links that no one, including me, has made before - and it all intuitively fits. Everything links.
So what next? Not just for me, but for my daughter and her two year old daughter? No sunscreen? Not happy with that at all. But I don't want them to end up with this range of conditions, too - or worse. Because if this is all correct, and everything stems from chemicals on my skin, then what will using even more chemicals do to the next generation?
(By the way - thanks from me, too, Stephanie, for posting - really useful, if shocking for me personally!)
Denise
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Has anyone found a gentle face lotion WITHOUT sunscreen? Everything seems to be SPF 15+. I looked at Cervea, Cetaphil and Aveeno.
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I use this one: http://m.iherb.com/Earth-Science-Almond-Aloe-Moisturizer-Fragrance-...
But I notice other brands like Desert Essence all have face moisturizers with no sunscreen. My makeup does have sunscreen though the more "natural" type.
I don't believe anyone has concluded that sunscreen is a cause, though I am curious why they are thinking it's a cause -- or how they honed in on that -- since there are many other chemicals we use regularly.
I think the argument some have raised, that more people would be reacting if it IS sunscreen, does not necessarily hold up since it's possible that an enviro irritant could cause different reactions in different people.
I also initially went to the doc for a reoccurring forehead "sunburn" when I had not been in the sun. Dermatologists thought it was unrelated to the FFA which she diagnosed me with but I have since convinced her otherwise... -
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Permalink Reply by DragonandFox on
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Wow! Stephanie, this is amazing! So incredibly thoughtful of you to share ALL of this and in such a comprehensive way.
So, I have a bunch of questions and comments.
WOW! SPF? Really? someone said how ironic it is that the Dr's tell us to cover up with SPF and look at that, it's the cause. Well, I'm one of those people. My Derm, who I adore years ago told me I should ditch my natural SPF's and use only Neutragena sunscreen with Helioplex. I went out and started using Neutragena helioplex for the face right away. I'm into natural and organic based products usually though. If I look back, I can definitely say the FFA started after I started using that product!!! :( It got terrible after a great deal of stress. I'm not even sure how to wrap my brain around this.
I suggest all Dr Hauschka products otherwise. organic and effective. expensive but worth it.
Stephanie, was there ANY discussion about hair dye's? I really don;t want to have to stop dying the grey from my hair, but...if I can go into remission or perhaps buy organic products and give up highlighting perhaps because of the peroxide...anything?
My Dr says the Retin A is not associated with the FFA too, so I'm not stopping using that (not organic, but most definitely effective)
ANY word about Excimer laser treatments?
I get acupuncture and it seems to be helpful to stave off inflammation.
ok that's it for now. look forward to hearing back and hope you're all well and not suffering too much!
this disease SUCKS!
Eve A.
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I also wanted to note and/or ask, There was no discussion about the side effects of long term use of Clobetasol (Steroids?) The worst side effect is HPA axis suppression.
Did the Dr's say '0' SPF anywhere on the body? or just the face? So, should we stop applying it to the legs? arms? back? chest? What if you burn like a lobster without it? No more beach?
:(
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Permalink Reply by Isabel on
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Stephanie, was there any discussion on the emotional factors that trigger the condition?
I must admit that I find the sunscreen argument rather fragile. My uncle, now deceased, had already developed the condition in 1969 (when my parents got married) and never used sunscreen in his whole life. I went searching around for pictures of him and actually sent some to dr. Christos. This also leads me to think the disease was around long before the 1990's, when Kossard found it. Indeed there has been a paper positing that it has been around at least since the Renaissance:
Once again thank you all for reporting on what was discussed to the rest of us!!!
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Isabel, thank you for posting this. I found it very interesting and often wondered about that when looking at Queen E 1 Tudor and other people from the past. So, I hope this realization will stimulate more interest.
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If I remember correctly some of the information I've read about Queen E1 Tudor also noted that she wore very heavy, mineral laden make-up. The disease may well have been around longer than thought and there may be some connection with cosmetics even back then...
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yes, good point Kikibob! I find it all so ironic since I've been primarily into organic and natural since I could remember, I have strayed at times.
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Permalink Reply by Ana_Brazil on
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Hi Isabel, this is a very important point that I don't see anyone mentioning... the emotional factor. My aunt is a pediatric Oncologist, and this was the first thing she asked me when I mentioned about the conference and the information Stephanie shared with us.
I started treatment just last year, for a condition I already have for over 10 years, that was probably trigger after a divorce. I had to go back to all my pictures, which is very easily done these days, to get to the point when I believe I started loosing my eye brows, and it was after that. I also did a lot of things to my hair at that time to look more beautiful, I actually did more things to my hair and skin at that period, that in my entire life. So I believe it all played a role.
After my divorced, which was a very strong emotional moment, I had 2 years of very stressful situation, and that's when I notice I was loosing a lot of hair, but my focus was on leaving that moment and going to the situation the best I could, and I am POSITIVE my emotions played a VERY important role on my condition.
After I started my treatment only last year, the only moment I notice loosing hair was after a stressful situation a few months ago. I notice the inflammation and the hair loss.
One felling I have that is very clear to me in my life, and living in Brazil, is FEAR. The Chinese believe that fear is relater to our kidneys, and that means we need to take care of that organ, clean it and keep it healthy... water. Which I am not very good about it.
I consider myself healthy, I eat well, I became a partial vegetarian (I still eat eggs and fish), I exercise, I do yoga, I take hormones replacement, I don't drink or smoke. We don't have cases of hair loss in my family, and then this. So I have to believe it is related to our emotional state.
Thank you for bringing this up!
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