www.alopeciaworld.com
CARF 2018 Conference Notes:
First of all, I am so glad I went to the CARF Conference! It was worth every dime I spent – a true investment in myself, but hopefully I can bless and encourage others from what I learned.
The CARF staff and volunteers are friendly and eager to help each of us. The doctors who presented information are compassionate towards us patients and passionate about their research to find the cause and cure for cicatricial alopecias. I’ve never been to a conference where presenters are so accessible to the attendees, eating meals with us, mingling with us, and answering our zillions of questions.
CARF will have a new website launched soon. I encourage you to check it out when it goes live and at the very least, sign up for their e-newsletter. They will be bringing back the physician referral list, launching an anonymous online support group (especially helpful for those of us who aren’t on Facebook), and providing ways to connect to support groups in your area. Don’t have one in your area? Considering starting one! There are so many others just like us who we can be of support and compassion to in this journey of scarring hair loss.
Now, a few quick words: this will be a lengthy post. I have 12 typed pages of notes from the day and a half seminar! I will do my best to condense the information and provide topic headings in case you want to skip over things. Also, just a disclaimer that I am NOT a physician, I am a patient, and these are my personal notes as I heard them and nothing here is meant to diagnose, treat, or cure any scarring hair loss. I hope this information will be helpful to those seeking answers.
If there is anyone on here who also attended CARF, feel free to add things I’ve missed or correct any mis-information.
WHAT CAUSES CICATRICIAL ALOPECIA (CA)?
Dr. Jeff Donovan, Dermatologist from Vancouver, Canada
USEFULNESS OF THE SCALP BIOPSY
Dr. Michael Ioffreda, Penn State Health, Hershey Medical Center
BASICS OF LPP, FFA, CCCA
Dr. Kathie Huang, Harvard Medical School, Brigham and Women’s Hospital, Boston, MA
*Note – the majority of conference attendees have LPP and/or FFA with a lower number of CCCA represented
BASICS OF DLE, DC, AND FD
Dr. Kimberly Salkey, VCU School of Medicine
*Note: There were only two attendees that I’m aware of who had one of these types of CA
PRP THERAPY
Dr. Ronda Farah, University of Minnesota, Health Cosmetic Center, Lead, Dept of Dermatology
JAK INHIBITORS
Dr. Brigitte Sallee, Columbia University
USE OF NARROW BAND UVB TREATMENT
Dr. Maryanne Senna, Massachusetts General, Founder of Hair Academic Innovative Research (HAIR)
SURGICAL THERAPIES
Dr. Nicole Rogers, New Orleans, LA
TREATING ITCH AND PAIN
Dr. Sarina Elmariah, Massachusetts General
LASER TREATMENTS
Dr. Ronda Farah
MEDICAL THERAPIES FOR SCARRING ALOPECIA
Dr. Lynne Goldberg, Boston University School of Medicine
NUTRITION AND HAIR
Dr. Yolanda Lenzy, Dermatologist
THE MIND BODY CONNECTION
Dr. Maryanne Senna
CAMOUFLAGE OPTIONS FOR SCALP AND EYEBROWS
Dr. Nicole Rogers
SAFE HAIR STYLING
Dr. Yolanda Lenzy
Q&A (a collection of questions asked by attendees throughout the conference)
What triggers this process?
Environment and Genetics. Genetics are not found to have a link with LPP or FFA. Genetics are more prevalent a cause in CCCA. Environment: infection such as staph has some role in Folliculitis Decalvans. Trauma or injury to scalp can play a role. Sunscreens – still not enough data to be sure that sunscreen plays a role.
What triggers LPP?
Still don’t know. Drugs, viruses, contact sensitizers such as hair dyes, sunscreens, makeup, are all still being researched.
Androgens?
What is the goal of treatment for CA?
At this point, the goal of treatment is to stop inflammation and slow or halt the progression of hair loss. This is accomplished using topical treatments, injectables, oral medication, or excimer and other laser treatments.
What do the doctors need most?
What if my insurance doesn’t cover testing or treatment for CA?
L66.1 is the code that should be used – not a guarantee it will work but this is the one the doctor panel said to use. Doctors shouldn’t use the standard code for “alopecia” as some insurances may not accept this.
Do we know if CAs really burn out?
We do not know for sure at this time.
If it burns out, is it for good or will it come back?
Also unknown.
How often should I go back to my doctor for follow ups?
Doctors usually space out visits as treatments progress. From several times/week, to once/week, to once every other week, to once/month and so on.
Do you need a biopsy to confirm burnout?
Doctors said YES. That is the only way to truly know. It will confirms a lack of inflammation.
Is there a correlation of thyroid disease and CA?
Hair loss from a thyroid condition is a separate cause and not related to CA.
Can I have more than one type of hair loss?
Yes, you can have more than one type of hair loss. In fact, there is a fair amount of overlap.
What about sunscreen?????
Avoid chemical sunscreens. Titanium dioxide okay. Blue Lizard Baby or Sensitive are good options. Look at your cosmetics too. Err on side of caution and eliminate the chemical sunscreens. That said, they really don’t know yet if sunscreen is a cause of CA.
Are there any other conditions of health that seem co-mingled with CA?
Yes, there can be – especially other autoimmune disorders. Make sure your primary doctor is looking at your overall health picture.
Is CA an autoimmune disease?
Yes, doctors thought it is an autoimmune disease – it does fit the classification. LPP patients tend to have other autoimmune issues going on.
What about my dry eyes, dry skin, rosacea? Is there a link?
Yes, there is a link with the loss of sebaceous glands affecting other areas – particularly in FFA – dry skin, dry eyes, and rosacea.
What about gut health?
Not much was said about this other than that the doctors agree gut health affects many areas of the body
What drugs should I stay away from?
Doctors encourage us to go to pubmed.org to research drugs and side effects. Look at the side effects when you are prescribed something. If you aren’t comfortable with taking the medicine or if you see something in it you are allergic to, don’t take it.
What foods should I stay away from?
We all metabolize foods differently - just know your own body – whatever makes you itch, bloated, etc, just avoid them. A full elimination diet like AIP – one doctor said it’s hard to recommend it to people until there is more information. It can’t harm you – may make you feel better overall – but no research or evidence it helps with hair loss.
What alternatives are there to sunscreen?
Search for SPF clothing (Land’s End was one brand mentioned) to protect from the sun.
Is it helpful to have my cortisol and/or DHT levels tested?
Doctors don’t normally test these. Cortisol is hard to test for. There is no data on this. Hormone levels usually test normal with pattern hair thinning. (I have FFA and my hormone levels all test normal)
Is there a link to menopause?
When the sebaceous glands shut down - they go almost to 0 – skin gets dry, vaginal dryness, hair texture changes – and those who are predisposed to get CA, menopause activates the process of sebaceous gland shut down (as well as destroy stem cells as mentioned earlier). There is a study by Kossard on menopause and FFA you can read – it’s on pubmed.org
Does taking Dutasteride increase my risk of breast cancer?
There are no direct studies on this. But if you have a family history of breast cancer, the doctor recommended not to take Dutasteride or Finasteride. In fact, some doctors won’t prescribe it to you if you have a family history of breast cancer.
Is it safe to color my hair?
Again, doctors recommend to do patch testing to determine if you are allergic to an ingredient. If not, it’s ok.
What’s a good solution for facial papules?
Retin A products seem to work well for this.
Other tips from show and tell time:
Hair Camo: Hair Direct, Derm Match, Boost n Blend, Toppik, Couvre
Eyebrows: Anastasia Dip Brow or Sephora brand brow pencils (get it two different colors and blend them. “Model in a Bottle” spray helps set the brow pencil to keep it from rubbing off.
Swimming solution: Nammu swim hats are great to use when you are swimming
Scalp pain or burning: Iced cap, Elasto Gel, bag of frozen peas
At home lasers: Hair Max, Capillus
Hair pieces: we looked at options like wigs, bonded hair pieces, taped front pieces. Davlyn tape was recommended for taping pieces down. You can find this at hairdirect.com
Tags:
Thank you
I appreciate these notes so much
Mary
Oh wow CurlyK that is absolutely BRILLIANT. Thank you so very much, from a sister Down Under! I will be printing all of this out for some invaluable references!
I recently saw a naturopath who posed the question whether it was anything to do with my sitting and working in front of a computer for 8 hours a day five days a week - for 15 years! A very interesting observation, which I had actually wondered about at some point. I don't suppose there was any discussion or mention about that at the conference? A test he did (before I told him of my exposure to the computer and whatever it and the wifi emanates!), showed that I had a lot of exposure and absorption (?not sure if that is correct description, but I think it is close) from electromagnetic energy. Has anyone else had a lot of exposure to computers/wifi etc? I apparently have FFA, I have never had itchiness, or papules etc.
Thanks again for your exceptional 'notes'!
Interesting point about being in front of a computer for long periods. I too worked in front of a computer for about 30 years! It is possible, but so many people work all day in front of a computer these days, you'd think that FFA would be much more common than it is -- and in younger people too. Everyone seems to walk around staring at their smart phones too. I don't know, maybe it could be a contributing factor though. And maybe it's becoming more common?
Thank you so much, CurlyK, for such a great summary of the CARF Conference. I am new to this site and group. Lots of very helpful information. I was diagnosed with FFA back in 2009, took Plaquenil for about a year and a half, and that successfully stopped my hairloss then. I lost hair at the sides of my head, my eyebrows and most of the hair on my arms and legs (special bonus :-). Anyway, I believe it just burned out although I don’t recall my doctor taking a biopsy. She did check it at every check up. Eventually, she retired and I, too, retired and moved. Anyway, my hairline did not recede anymore until July 2017 when I think I got a flare up. I’m still usually able to disguise it by bangs. My husband and I moved to a warm, humid place - which is absolutely lovely - but wearing a wig here would be really uncomfortable! The following is a description of some of my symptoms and any ways I’ve found to mitigate them. I’m hoping this will help some of the other FFA group here in at least knowing someone else had similar symptoms perhaps.
Well, that’s a lot, but I hope some of it is helpful or at least food for thought.
Hi danab2, thank you for all the info..I wouldn't be surprised is low vitamin d is implicated in FFA, as more and more studies seem to be linking vitamin d deficiency with auto immune disorders
Thanks also for the tips re cosmetics.
Thank you for your informative posting. I received more information from it than from my dermatologist. I waited 3 months to see him. He flipped through my almost non-existent hair for 10 seconds, wrote Alopecia Areata...Alopecia Totalis on a piece of paper & told me to google it. Other than that, he wrote a prescription for Protopic. I used it for 2wks on my scalp, 4 wks on my brows with no positive results other than increased irritation, so I stopped.
Thanks a million for taking the time to pass on this info. Much appreciated. X
Thank you so much for being such an awesome notetaker! I must say that my notes were not good, so I am so grateful that you were able to capture all that was said so well. There was so much to take in that quite honestly, I think we need another day just to process, talk to each other, and form discussion groups.
Thank heavens we do have this on-line forum. I must admit that I have been absent from the group lately because I had to take a break from reading all of the posts because it was becoming overwhelming. I’m back now and hope to be more of a support and encourager to all of you. We need to be there for each other.
As I think back to the conference, I have to say that one of the highlights was meeting you and spending time with you. I hope you are doing well. Thank you again for these notes. I’ve saved them. Hugs.
CurlyK .... THANK YOU for this!! I hold this info invaluable! I have kept the last conference info on my iphone all these years. This is awesome and I see a lot of progress in how they are thinking about this disease has improved.
This gives me hope! I don't particularly subscribe to the school of thought that it is not genetic because my Dr, who is conducting a study at Columbia U does believe it and in fact my mother was experiencing symptoms and at 80 yrs old, was biopsied and diagnosed with the same thing. My sister and cousin (pediatrician) from my extended family (female cousins, mother's are very close) got to thinking about this and pointed out that our grandmother had a lot of hairloss and would always say her scalp was burning and itchy!!
But so much great info! I did know some of this from my own Dr. but I loved seeing this laid out and to know there are a LOT of Doctors who are now working on this and aware! Surely that's a sign we should have hope!
My Dr. knows that there are people like myself who can't take anti inflammatory medications, at least in pill form. Those things activated an Ulcer that is now permanently there and in waiting after 2 years working on putting it to sleep.
Thanks again!!
best of luck to us all!
Thank you CurlyK! Your exhaustive notes on the conference is a gift to all. So much to consider and research!
I live in a state (MI) where medical marijuana is legal. I have been experimenting with cannabis oil for a few weeks, alternating it with Tacrolimis, Elidel and Flucocinalone. I've found the cannabis oil very soothing, and I think it has reduced inflammation a bit. I also take Plaquenil and Dutasteride daily.
Someone posted a question about eyebrow "therapy". My doctor prescribed the generic version of Latisse, which some people use off label to thicken their eyebrows. It seems to help, but it's very expensive. Always a down side......
Has anyone noticed itching skin from taking Plaquenil (Hydroxychloroquine)? I have developed itching on my lower legs, feet and forearms.
Hi CurlyK
Thank you for all the information you have shared with us - really great notes. I have just caught up with this site, having been sleeping much better over the last couple of months, I had begun to think that maybe - just maybe - the hair loss had stopped. But no, over the last couple of weeks the itching is back, and I am not sleeping as well as I had been. A vicious circle, itchy scalp, too many thoughts going through my mind in the wee small hours. Reading through your notes and everyone’s comments is very helpful. I have stopped any medication for sometime now, due to it not seeming to be of any benefit, the negative side effects, plus the experience of others on here. I am happier to seek a more Mindfulness based approach; healthy eating, and hopefully, less stress - although, building another career albeit in a less stressful area isn’t without its moments. :)
Thank you and everyone on here for all the support and shared caring.
xOx
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.
© 2024 Created by Alopecia World. Powered by