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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 SJC on
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Hi Lori,
I can't do a full post at the moment yet I need to tell you - I absolutely know who you are - YOU ROCK!!!! Pun intended. You inspired many of us that night and I'm so sorry I didn't get the chance to thank you in person.
S
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Permalink Reply by Lo on
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Thank you for those kind words! It was an amazing couple of days and certainly I appreciated the opportunity to share a story that is very similar to so many of us. And I loved your Pun... Ha ha. Blessings to you. I'll meet you next time, I hope!
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Permalink Reply by sallylwess on
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Thank you Lo for your kind words. I wish I could have met Stephanie. It was a great conference. I do hope to distill it all down into some sort of synopsis soon.
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Thanks for the info Stephanie! I too had a strange red itchy face rash for 10 years before ffa. I was told it was Rosacea but the medicine never help and I always thought it was something other than. I was thinking about the sunscrean and if that were it there would be alot more showing up with this condition Id think. Im following Donovanmedical on instagram and he seems very knowledgable about ffa. He is great to reply back to all my questions. He said finasteride works for 80% of people with ffa. It does not bring back total hairloss but some have "significate changes". Im on Month 3 and still waiting for mine.... Thanks again for all you notes.
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BBQ,
Donovan was at the conference and he gave interesting info. I think you're wise to follow him and I plugged into his facebook page today. Those odd symptoms were ones I had, that's why I took particular note. They're the reason I went to a regular derm seeking answers, as I had no idea it was related to hair. Those symptoms were skin conditions in my opinion. I hear what you're saying re: sunscreen and the skeptic in me has those thoughts too. But, perhaps not everyone who wears sunscreen will get CICAL. Will try to do an updated post with more conference info tomorrow.
S
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SJC, is your face rash gone now? Mine went away right when ffa started. It was not a butterfly shape but moved around my face throughout the years. I kept cortizone cream on it and it would help. Sweat made it worse. So everytime I exercised I would splash cold water one my face and it actually stopped the rash completely....thats when the hair started. That is why I thought the rash moved into my hairline but the derm said they are different. Anyway, Is your hair growth still improving?
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Yes, the redness rarely happens. When I saw my local derm (well in advance of FFA diagnosis) she prescribed a treatment of Finacea in the AM, Retin A in the PM and wanted me to seek make up without chemical sunscreens/additives/irritants and start using Cerave Zinc sunscreen for face. This was about 2 years before FFA diagnosis, if I recall. I must say that I definitely have developed sensitive skin as I've gotten older and am not certain that has anything to do with FFA, who knows. You mention the non-butterfly rash...I had something similar...regardless of the pattern, it caused my PCP to wonder about Lupus at one time.
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Permalink Reply by Isabel on
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Hi Stephanie - thank you very much for posting this and let me congratulate you on a job very well done taking all those notes!
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All,
I have a little time to continue my post from above, so here goes.
Q&A Session
There was an hour long Q&A at the conference. Questions were developed by patients, written on a form and placed in boxes they had around the conference area. The doc's chose and grouped popular/similar questions together and then a panel discussion began. Below are a variety of responses from the multiple doctors sitting on the panel. Again, most were opinionated and sometimes those opinions differed.
Nutrition and Diet
Diet plays a role in hair health. Eating a healthy diet allows for good blood flow to the scalp. A few stated that red meat has a lot of nutrients and many of us have moved away from eating it - inferring we may not be getting some nutrients due to our lack of red meat. One mentioned the meat should be lean, organic, hormone free. On doc said, be careful when choosing a diet that eliminates whole groups of foods as you may not get the nutrition you need. There was a brief discussion about specific diets. Gluten free didn't seem to make any difference to CICAL's in their opinions. The general feeling was that other than eating a balanced, nutritious diet they didn't see much benefit to specific diets nor was there any data to suggest Paleo, AIP, no nightshades, no dairy, etc.. provides anti-inflammatory benefit for CICAL's. They did state that many patients just felt better while eating this way.
One doc mentioned that Tumeric was an interesting supplement that may have some anti-inflammatory value - orthopedics are now using it with their patients to lower inflammation associated with osteoarthritis. Many seemed to think there might be merit in turmeric. A few said CoQ10 is known to reduce inflammation and oxidative stress in the body.
Hair and Nail Vitamins
This came up after diet and nutrition. Should we take these, are they of benefit? The docs said there is no known toxicity level with biotin (thus, it's fairly safe to take), however they stated there was no data showing it grows or does anything else for hair. But it is proven to work really well for nails. They mentioned that a lot of their patients took these vitamins and some, such as Viviscal, were more unique than others (marine complex) that were mainly biotin based.
I personally found it odd that there was a VIviscal booth in the conference room and the folks manning that booth didn't speak up during this discussion. I would think if there was any solid data, or even "patient" experiences they'd want to chime in.
Other vitamins discussed:
Vitamin E and Selenium - both cause hair loss if levels are too high.
Iron - should ensure adequate amounts as low iron causes hair loss. Depending on the type of test taken (the optimal ranges and units are different), levels should be 40 or greater or 75 or greater.
Vitamin C - Studies show it is beneficial for hair loss.
I'll add for those that don't know, Vit. C has a very short half life in the body. You can take it in decent sized doses without harm (1000 mg a day, for example). What the body doesn't use simply gets urinated out.
Vitamin A - excess amounts cause hair loss, but it's quite a bit - in excess of 10,000 units a day.
Vitamin D3 - Low blood levels of D3 cause hair loss. The magic number for D is 20 or above. If under 20 supplementation is needed. Right dosage is 2000/mg/day. Most, if not all, felt this was really important for CICAL patients.
A discussion started about topical Retinods (tretinoin, tazorac, etc..):
Dr. Bergfeld from the Cleveland Clinic was quite vocal in saying she has used minoxidil in conjunction with retinoids on her hair loss patients for over 30 years without adverse effects. Most prescribe Retin A for facial papules due to CICAL regularly with decent results. Tacrolimus (another brand name retinoid) can be very helpful for dark spots (which most of us, and our derms, think is hormonal melasma) due to FFA.
Surgery was also discussed. This was focused on facial and scalp surgery (face lift, brown lift, hair transplant,). I think it might have been Dr. Donovan who stated it was not a good idea to have facial/scalp surgeries when you have CICAL's (or, I suppose, if you're at risk for a CICAL) as it provokes and flares the CICAL.
Hair Products
Varied opinons here. Sulfate free products, avoid any product that causes itching or burning, aim to prevent breakage, deep condition ends only under a shower cap to retain moisture that is lost due to CICAL and CICAL treatments. One said she suggested a medicated shampoo 1st, then follow with a moisturizing shampoo, then a conditioner - a 3 step process. They all thought scalp care was important (I took that to mean two things: reduced inflammation/not causing inflammation and patient quality of life when the scalp wasn't itchy and inflamed).
One derm prescribed minoxidil for all her patients to get density from the areas that were not scarred.
Another interesting conversation to note: They stated itching and burning of the scalp is not the lone indicator of active inflammation. Inflammation still occurs in CICAL patients regardless of whether itching and burning is happening. Some patients have itching and others have never had itching. If there are noticeable symptoms, however, this does mean the disease is absolutely active. They urged us to use our steroid scalp medicines all the time, not just when our scalps were inflamed and itchy. It is best as a preventative measure vs. a reactive measure.
Okay, so that's what I have for today. I'll comb my notes for other interesting factoids and pass them along as soon as I'm able. Wishing everyone a great day with no scalp inflammation!
Stephanie
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Permalink Reply by DragonandFox on
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I just want to share that Clobetasol shampoo has sulfates!! I called the company to talk to them about it but they did not understand.
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