Alopecia World
Where acceptance is all there is!
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
-
Permalink Reply by Lisa D on
-
Stephanie,
Thank you so much for sharing with us! It is all so interesting to hear. I had been diagnosed with rosecea long before being diagnosed with FFA 1 1/2 years ago and I have noticed the ropey veins at my temples for some time. I have been using a tinted moisturizer with SPf for many years. I use sunscreen on my body as well especially after having had skin cancers removed. Can't imagine not using sun screen. I am anxious to learn more about food and products that help or hurt. Can't wait for your next installment. Lisa D -
-
-
Stephanie thank you so much for a thorough reporting of the information you gathered from the conference. Such a wealth of information! Ironic to think that the use of sunscreen as we had been encouraged by the medical profession, thinking we were being responsible and doing the smart thing all these years, could possibly be a source and a cause of our condition/despair ☹️. I have faithfully applied sunscreen prior to makeup (and likely applied it as an ingredient of my makeup as well) for the last 20 years. I recently purchased from a Healthy Planet store a more natural sunscreen with only zinc oxide as the active ingredient. However, from what you're reporting, it would seem that I shouldn't even use that. I'm wondering if sunscreen is safe to use on exposed arms and legs...after all these years one can't help but feel a lack of protection with regard to being in the sun without sunscreen akin to driving without a seatbelt now that we are all accustomed to it and educated that it is the safe thing to do...
-
-
Permalink Reply by sallylwess on
-
I understand the zinc oxide is ok. I have tried moisturizers and make up with zinc oxide very recently and broke out in a rash. I am still searching for a product to use.
-
-
-
I have been using all natural products as well, which contained sunscreen (titanium dioxide and zinc oxide) and rated a 1 on the EWG site, but my hair loss continued with the FFA. You mentioned your gut feeling. My gut feeling is that the titanium dioxide has something to do with the hair loss. I did some research and found that it can be harmful even though it is all natural. I have also stopped the Zinc Oxide because of the unknown and want to see if by stopping these two ingredients if anything changes. In my research I also found that red raspberry oil and carrot oil have natural sunscreen tendencies up to 50 SPF so I have made my own serum with other essential oils to see if that may work in protecting, at least my face from the occasional sun I am in. In my research I also found that most mineral makeup, which I had been using for years, has titanium dioxide. I have now switched to a new line that doesn't have titanium dioxide and it is called Omiana. It is too soon for me to say if it has made a positive difference, but it doesn't hurt to try. By the way, when I say I have done research, what I mean is what I have found on the intranet going to multiple unrelated sites that site the same information.
-
-
-
How are you doing with the Omiana - zinc oxide is a physical spf and most everything else is a chemical spf - the chemical ones are absorbed and some actually go deepe the longer we are in the sun - I to have for years been using sunblock and makeup and moisturizers with these chemical ingredients
-
-
-
I really like the blush the most. The foundation is ok. When I sweat with it on it doesn't work well. I am open to other suggestions from others on foundation without spf.
-
-
-
Thank you for sharing what you learned....it all sounds very interesting! Especially the sunscreen part...I used a moisturizer with sunscreen in it for years! I would love to hear more when you get a chance!
-
-
-
Thank you so much for taking the time to share with us, Stephanie!
The most fascinating item to me was the list of symptoms not usually mentioned, most especially the dark spots on facial skin that looks like melasma --- I have been searching for years for an explanation to my weird hyperpigmentation (it was this condition alone that made me go to dermatologist that subsequently, and quite accidentally, led to the FFA diagnosis) but no doctor could adequately explain it. I always felt it had a connection to the FFA, as was my other skin problems like the small bumps that an allergist said looked like inflamed hair follicles, because my loss of hair and odd facial symptoms started around the same time.
I'm strangely relieved that there is now some evidence of the connection and that there is not some other condition I should be investigating.
-
-
Permalink Reply by Lo on
-
Thank you, Stephanie! I was there, as well! I did get to meet Sally - and Nancy (Nancy and I are very close). Sally is an amazing woman! I can't believe I didn't get to meet you. I am not sure if you were at the diner - but I am the one who spoke that evening. It was such a great conference - and a reason for all of us to hope, and keep our heads up.
Blessings -
Lori Bertella
-
-
-
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
-
Disclaimer
Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.
© 2026 Created by Alopecia World.
Powered by
