Today was a day full of learning and information, and new friendships and connections were well and truly forged. I’m recording here important information from today!
It began with brunch meeting with two incredible women. Chaille DeFaria and Corinne Lightweaver, who are both are connected to the Trichotillomania Learning Center, a key place treating Compulsive Skin Picking and Hair Pulling disorders based in nearby Santa Cruz.
They had both attended the talk I gave yesterday and had seen my exhibition. They were very supportive about my presentation at UCLA and excited by my work. It was thrilling to meet two people active in advocacy and very knowledgeable, and as with meeting Lauri yesterday, I felt tremendous affinity with them, like I’d known them all my life, such was the rapport and shared understanding. It’s the first time I’ve been able to meet and learn directly from others engaged in recovery from the disorder.
We had such rich conversations covering everything from our lived experience, recovery and hope to significant new scientific research into Compulsive Skin Picking and Hair Pulling disorders. I’m learning that people with CSP may have a whole scheme of manifestations of the disorder from zoning out for long periods in a trance-like state and picking due to boredom, anxiety or stress, as well as those with perfectionist tendencies, convinced that skin picking will even out perceived irregularities or flaws in the skin. It’s also a disorder which can be unconscious, and in my experience picking without thinking about it, even picking in my sleep at the height of being unwell, were certainly the most frustrating and challenging aspects of this disorder. It’s one of the biggest deals still for me. How can you do something about it if you’re not even aware you’re doing it!
They explained TLC is about to begin a 7 year research programme, the Body-Focussed Repetitive Behaviour Precision Medicine Initiative, the first of its kind in the world I believe, into what is happening in the brain for those living with these disorders. This is phenomenal news. The new scientific research, connected to UCLA and the Semel Institute of Neuroscience, will enable a large and detailed study to be undertaken for the neurological functions at play when skin picking occurs. It is so thrilling to think that here in LA this research is just about to begin! Chaille and Corinne explained that MRI’s, DNA samples and blood samples will be taken from a large study group of all ages, genders and ethnicities. There are also plans to run family studies to look at how Skin Picking occurs in multiple family members. I’ve learnt that the genetic link has not been scientifically proven yet, but there’s plenty of anecdotal information that suggests this may be true for at least some people.
Corinne and Chaille also suggested other contacts in UK who will be useful to connect with when I return to London. Judith Stevenson who is writing a PhD about Compulsive Skin Picking and the brain, and Linda Ellory, a former hair-puller who is now running hair salons actively working with her experience to help others! Awesome stuff!
And later this afternoon I was delighted to meet with Dr John Piacentini, Professor of Psychiatry and Biobehavioral Science at UCLA Semel Institute for Neuroscience and Human Behavior. In just an hour we covered a huge amount of information. He explained Habit Reversal Therapy to me which has been an active treatment since the 1970s for CSP, Hair Pulling disorders, physical tics and more. One of the things we both feel fired up about is finding the right treatment for an individual. The fidget tools and Habit Reversal Therapy techniques are only valuable where a patient finds they intervene in the behaviour sufficiently to stop it. In my own experience finding a way to be mindful and redirecting my hands through art has been key to keeping well.
John will be working with TLC on the Body-Focussed Repetitive Behaviour Precision Medicine Initiative too. He’s a member of the Scientific Advisory Board for TLC.
One of the exciting conversations we had was about Compulsive Skin Picking in animals! A whole new realm of information for me. CSP is found in a multitude of animals- mice and rats, cats and dogs are known to skin pick. In the 1970s, John explained there was a study on dogs who displayed the Canine Acral Lick, repeatedly licking at a paw or part of the body! Similar manifestations of Skin Picking and Hair Pulling are found in birds too, some parrots repeatedly pull out their feathers. John is going to connect me to Dr Joseph Garner from Oxford University, now based in LA who is researching skin picking in animals. Dr Garner is studying the neuro transmitters associated with skin picking and trying to ascertain how and when an intervention can be made to stop the picking from happening! I am hopeful to connect with him while I’m here.