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

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Replies to This Discussion

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 DragonandFox on February 21, 2017 at 2:12pm

hi Guys. Today is Feb. 21, 2017

I am pulling this great post up again to the top of the line by adding something here regarding SUNSCREEN.

I saw one of my Dermatologists last month and showed him to marks on my face I was worried about.  He says they are sun damage related, but nothing to stress about.  I told him about the Dr at the convention saying people with FFA/LPP should not wear Sunscreen and he became very. Angry!  he said, "that is terribly IRRESPONSIBLE!"  There has never been ANY data stating ANYTHING about Sunscreen and most of us have extremely sensitive skin, so telling US of ALL people NOT to wear Sunscreen can actually be deadly!  Skin Cancer is no joke!

I'm VERY frustrated with this stupid disease right now!

I actually thought I might be in remission recently but, NO SO LUCK!  I went from some regrowth and no pain for weeks, then out of nowhere, hair seems thinning again and my scalp is raging red and super sore!

I watched GIRLS last night and cried because the character was wearing her hair the way I did years ago, but can't any longer because of this stupid , cruel disease!!

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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