In Our Voices – Raphaele’s Story

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This month, we are highlighting stories “In Our Voices,” where community members share the tremendous impact that you can make by donating to  TLC. Today, we hear from Raphaele.

Please join Raphaele -Donate today to make sure TLC can reach all who need help.

Hi! My name is Raphaele. I’m 43 years old, and I pull out my hair. I did about 3 times today.

I had a long period of over 10 years when I did not pull at all. Then I was very disappointed about 5 years ago when I started pulling again. I really don’t know what the trigger was, but I haven’t been able to stop this time around.

I’ve tried anti-depressants, but I didn’t notice myself pulling any less.

I tried seeing a doctor  but he didn’t know about trich – and didn’t help.

I’ve tried everything – wearing gloves, wearing things on my fingers – eventually I just got so frustrated with all those little things that don’t work.

I’ve really felt on my own in terms of managing my trich.

But last April I went to the TLC conference – and it was life changing.

I met others who pull and pick, heard their stories, and shared mine. The TLC Community became my family – we talk to each other almost daily on Facebook. To have people who just get you — when you can write a few words on a Facebook post and everyone understands — that’s truly a blessing, a gift. 

TLC has been an incredible gift for me. 
Thank you for being a part of this community. It’s amazing how much TLC has connected all of us.
Now, we need to give others the gift of TLC.
  • We need to give the gift of community – by supporting TLC’s outreach programs so that no one ever feels like they are “the only one.”
  • We need to give the gift of treatment access – by continuing to train more treatment providers – so that EVERYONE has access to knowledgeable providers trained in best practices.
  • We need to give the gift of answers – by  moving the BFRB Precision Medicine Initiative forward. This is a ground-breaking opportunity to finally understand why some treatments work – and others don’t – and provide the answers we’ve all been asking.

So, that’s why I am sharing my story with you – we need to come together to end all of this suffering.

If we don’t do it, who will?

Please, think about the gifts you’ve received thanks to the generous hearts that support TLC.

Will you pay those gifts forward?

Please donate to TLC today.

Most sincerely,

Raphaele

3 Ways Your Support Makes A Big Difference

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Here is something we all know: there is nothing easy about trichotillomania or skin picking.
Accessing treatment, getting support and understanding from loved ones, finding recovery – are all challenging, and leave many of us feeling defeated, ashamed, and stuck in an endless cycle of pulling and picking.

But, thanks to the TLC Community – this is changing. And with your help, some things WILL get easier.

Here are three big ways your gift can make a difference.

 

1. Public Educationad

TLC donors sponsor a public awareness campaign every fall. This year, one donor’s gift of $650.00 enabled us to boost our awareness campaign with Facebook ads -reaching 150,000 people with skin picking disorder with information about how to find help.

Your gift to TLC has big impact!

 

 

 

2. ocdlaAccess to Treatment

TLC Professional Training Institute graduates report higher abstinence rates for their BFRB* patients. Clinicians also report seeing more BFRB patients and training their colleagues in BFRB treatment. Last year, your support trained 30 clinicians in Best Practice Treatment for these behaviors.   

Your gift of $1,000 educates a treatment provider – bringing the best current treatments close to home.

 

 

3. groupBetter Answers, Faster
TLC is launching a cutting edge research effort to dramatically improve remission rates in the next seven years.  

Your support has brought together the world’s top BFRB researchers and clinicians to create the BFRB Precision Medicine Initiative – a nationwide, collaborative research effort to transform the landscape of treatment possibilities for hair pulling and skin picking.

Your gift of $10,000 or more will help launch BFRB research on an unprecedented scale.

 

TLC is the only nonprofit organization in the world training treatment providers, funding research AND raising awareness.

And, with your support, we can do SO MUCH MORE!

Please give today.

If we don’t come together to create a better future for all affected by BFRBs, who will?

In Gratitude,
Jennifer Raikes
Executive Director

 

PS: With your gift of  $4 a month or more, you’ll receive access to TLC’s extensive webinar archive and free registration to all future webinars, a subscription to TLC’s quarterly newsletter, InTouch, and discounts on registrations to regional events. Please make your tax-deductible contribution today!

Call for Video Submissions! Help TLC with “Breakthrough”

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We need your old video footage!

Artifact Studios in Los Angeles is in the midst of creating a short promotional video about the TLC. Titled “Breakthrough,” the video celebrates those moments when family members, friends, therapists, researchers, and community activists have had breakthroughs—and shows how TLC helped make them possible.

The “Breakthrough” video will be used by TLC on the web and during outreach activities to help educate people about the organization and encourage them to donate or help with fundraising efforts. By submitting a video, you will need to sign a permission form.

We collected some incredible footage at the last TLC Conference –  and now we’re looking for visuals to help bring the video to life. And we need your help!

What we are looking for is anything you would be comfortable sharing publicly that reflects your experience with BFRBs AND your personality. Any videos, of any quality. Old home movies, or videos that you shoot now with your phone.  We have a few suggestions below for the kinds of things we’re looking for, but we are open to surprises. We’re especially looking for any material that conveys emotion.

Could be videos showing activities like:

  • Trying on hats, wigs, getting hair cuts
  • Looking in the mirror
  • Wearing a TLC wrist band
  • Close-ups of your hands
  • sweet dance moves
  • playing sports
  • swimming
  • learning a new skill
  • meeting and hanging out at a TLC event
  • checking out the TLC website
  • footage of birthday parties
  • parents hugging kids
  • selfies with your doctor or therapist
  • demonstrations of a craft project
  • any footage that shows their creativity, sense of humor
  • simply laughing and having fun

By submitting a video, you are giving TLC and Artifact films permission to use your footage as we deem appropriate. To submit material, please visit this website for instructions:

https://dbinbox.com/gettingbetter

The deadline for submissions is January 5, 2015.

We’re casting a wide net to obtain as many video submissions as possible. Please help us spread the word to your friends and within the community. We’re looking to represent the full spectrum of experiences and emotions.

Thanks so much for all your time and help with this. Please don’t hesitate to contact us at leslie@trich.org with any questions. We look forward to seeing your videos.

Special Support Group Meeting in Cheshire, CT – Dec. 17th.

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Please come join our very special meeting and show your support for people with Trichotillomania.

Date: Wednesday, December 17th 2013.

Time: 6:30-8:30 pm.

Where: Lucinda’s Hair and Boutique

              650 Highland Ave.

              Cheshire, Ct. 06410

We will be holding a support group for anyone suffering from Trichotillomania. We welcome men, women and children to attend. This is a safe and non-judgmental place to share ideas, strategies, difficulties and successes. We encourage you to ask questions and share insights. We aim to discuss, help and mutually support each other in our efforts to understand and control this impulse control disorder.  Anyone who has trich or has a relative or friend with trich is welcome to join. We aim to include all opinions and age groups and talk on issues mainly related to trich. Most importantly, we want to give people the opportunity to know they are not alone, meet others with the same difficulties, and provide an opportunity to support each other.

Please come and the crew at Lucinda’s Hair & Boutique!

At this meeting we will be featuring guest speaker Dr. Dana LaPointe of Sustainable Health and Wellness, a licensed naturopath, who will naturopathic approaches to wellness.

 

Even though we don’t know each other, you are a source of support to me every day

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kathy - selfieHi. My name is Kathy.  Even though we don’t know each other, you are a source of support to me every day. Thank you for being a part of TLC – your gifts to this organization changed my life.

­­­My personal struggle is with trichotillomania. I began pulling my hair around 9 years old and I am now 54, so I have a long history.  I am passionate about TLC – and members like you – because you have been the single most important catalyst to my progress.

When TLC asked if I would share my story with you, I was torn.  I believe in TLC wholeheartedly – this organization literally changed the course of my life.  But I hate asking for money.  Then, I was reminded of the words of Robin, a developmentally-delayed man I met when I ran a community kitchen.  Out of the blue one day, he said to me, “Kathy, there is no free lunch.  Think about that if you get something for free: somebody else had to pay for it.”

That comment reframed for me how I feel about getting something for nothing.  There is no such thing.   Every research study I can refer to, every strategy I have learned, every time I can allow myself to believe that I am not crazy, every time I email a ‘conference friend’ who understands, it is because of the work of TLC.  And all of those resources have been created at the expense of someone who came before me. What better way to show my gratitude than to pay it forward? 

Your donation to TLC ENDS the SHAME.
As a teenager, I was bullied non-stop for having trich.  I don’t have any horror stories about mean kids at school, or cruel family members – I was the bully.  I never had anyone to counter the comments in my head, and they became my truth: you’re ugly, you’re crazy, why do you do this? why can’t you stop? you’re a failure, you don’t fit in… Some of my worst moments were waking up in the middle of the night after a bad spree.  Late night darkness magnified the gut-wrenching grief for the damage I had done.  How could I possibly face tomorrow?

TLC is our ‘credible voice’ in the public realm.  By providing solid information about BFRBs, TLC strips power from the bullying voices in our own minds, and fights the ignorance that creates real-world bullies.

Untitled designYour donation to TLC ENDS the ISOLATION.
I was 52 years-old before I met another person with trich at a TLC conference.  What made me happiest was seeing the many young people there with their parents – and the thought that their journey might be immeasurably easier because of what TLC offers.  TLC events, social networks, and their hands-on help to get local support groups off the ground means we no longer have to suffer alone.

Your donation to TLC  CREATES BETTER TREATMENTS
This year, we’ve all heard a lot about the “BPM,” TLC’s impressive initiative for BFRB Precision Medicine research. “Precision Medicine” means to analyze the cause of an individual person’s disorder –  and then to utilize targeted treatments to address that.  In other words, by gathering a ‘database’ of hundreds of brain scans, blood work, and patient-histories, they expect to be able to identify patterns or sub-types within our BFRBs – and to personalize treatments that will work best for each unique patient.

No one would be doing this kind of research if TLC wasn’t there. And TLC can’t do it without all of us working together.

I tried to stop (using will power) for 42 years and nothing changed. Your support for TLC gave me knowledge about this disorder and tools to improve my chances of success.  You made it possible for me to meet people who are like me, who know the burden of this disorder.   And you gave me answers – better understanding my BFRB was the key to silencing the bully in my brain and lifting my shame.  This is the greatest gift you have given me.  I’m still not pull-free, but in the past 2 years I have made more progress than ever before.

I give in gratitude for what I have received, to honor my progress, to express my hope for change, and to help my community. I hope you will join me in donating as generously as you can.

Thank you!donate-button

Sincerely,
Kathy

Getting to Know — Suzanne Mouton-Odum, PhD

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Suzanne Mouton-Odum, Ph.D.
Welcome to our new blog series, “Getting to Know…” where we’ll be featuring influential people in the BFRB community!
For the first installment – we’ll chat with Suzanne Mouton-Odum, Ph.D., a psychologist in private practice in Houston, Texas. She has treated people with trich and other body-focused repetitive behaviors since 1993, and has been a member of the Trichotillomania Learning Center Scientific Advisory Board since 2001. She is the co-author of The Parent Guide to Hair Pulling Disorder. She is the co-owner and lead developer of the interactive website for trichotillomania, www.stoppulling.com, and for skin picking disorders, www.stoppicking.com, and recently launched the app “Pull Free” available in the iTunes Store.
1. How did you first hear about TLC and how did you become involved with it? And why have you stuck with it?
I first heard of TLC in 1992 when I started working at UT Health Science Center in Houston, Texas for Melinda Stanley, Ph.D.  She was studying the neuropsychological correlates of TTM and I got to learn from her how to treat TTM.  I first met Christina Pearson in 2000 and attended my first TLC event in 2001. I fell in love with the people associated with TLC: the professionals, the TLC staff, and the sufferers.  I was hooked from the get go! I have never met such a lovely group of people who all have the same goal, to end the suffering of TTM and BFRBs.
2. How do you deal with patients who suffer from BFRBs?
My goal in therapy is to help people to learn about themselves, e.g., how they cope with stress, how pulling and picking serve a purpose in their lives, what internal and external triggers prompt pulling and picking, etc. After we know this information, we are able to build a plan that focuses on addressing these needs/triggers systematically.  Also, I think it is super important to address feelings of shame and isolation that many people with BFRBs experience.  Oftentimes, people with BFRBs have felt alone and ashamed of their behavior for a long time.  My job is to help normalize BFRBs and help them to feel better about life, with or without a BFRB!
3. What advice do you have for teens whose parents don’t know how to help them? 
I work a lot with parents to help them understand their children or teens.  BFRBs are not a child’s way of hurting their parents! Sometimes the best way to help a child/teen with a BFRB is to help their parent to understand the BFRB behavior. I teach parents how to be supportive, loving, and accepting of their child, no matter what!  I even wrote a book with Ruth Golomb for parents to help them to better understand their child, “A Parent Guide to Hair Pulling Disorder- Effective Parenting Strategies for Children with Trichotillomania.”  We wrote this book ultimately to help kids and teens, by helping their parents to be more supportive.
4. If you had one thing of encouragement to share with us, what would it be? 
BFRBs are NOT who you are, although it might feel like that sometimes.  You are a whole and wonderful person who has needs, talents, strengths, and feelings.  BFRBs are simply how you soothe your body in certain situations.  If you are not in therapy working on your BFRB, focus on developing all of the different and wonderful parts of yourself – be the best that you can be at whatever you have passion for! Learn to love yourself and all of your qualities, accepting that BFRBs are only a small part of you.  Remember to have compassion for yourself and to forgive yourself for not being perfect, none of us are!
5. Why do you specifically treat those with BFRBs? 
I like working with people who have BFRBs because they are hard-working, creative people who want to make changes in their lives.  I see people with BFRBs get better all of the time!  If you believe in yourself and you focus on using your strengths, you can do anything you want! Being a teenager is hard enough as it is, having a BFRB can really make a person feel overwhelmed.  Remember to focus on your strengths (e.g., courage, perseverance, kindness, curiosity, sense of humor, honesty, leadership, etc.) and to continue to grow those. Learning to be a better you and to develop your strengths will help you to feel happier and more confident.     
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Mackensie Freeman

Written by Mackensie Freeman, a 15 year old who is a member of TLC’s Millennial Task Force, raising awareness about BFRBs in the community by speaking with national media about her experiences with BFRBs.

Getting to Know — “Jersey” Christina Hammell

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“Jersey” Christina
Christina Hammell is a BFRB activist, support group leader, social media support guru, TLC Ambassador and a dear friend to TLC. Known as “Jersey Christina” on Facebook and in the BFRB Community, Christina has maintained sustained recovery from trichotillomania and has used her experiences to inspire and support others in our community.
1. In what ways are things different NOW for teens with BFRBs than they were when you were in high school? (If you had a BFRB then?)
I am not sure how things are different for TEENS specifically, as I am now an adult, but I think that there are more ways of being bullied. I am sure that there is still the issue of peer pressure, and the need to be perfectly beautiful. Now there is social media, which wasn’t around when I was a kid, so it is harder to avoid people teasing, and it occurs on a much larger scale. On a positive note, the internet/social media has changed the ability to get information/support/connect with other BFRB’ers that I couldn’t utilize as a teen.  It is easier to realize you are not alone now, and that will greatly increase awareness today.
2. Now that you are pull free, do you have any advice for people who want to stop their BFRBs?
I am 828 days pull free as of writing this.  I would say to take things little by little – one urge at a time. Instead of saying “I am going to be pull/pick free TODAY”, focus on I am going to control my urges RIGHT NOW. It will help to learn your triggers – journal. Find out who, what, where, when you want to pull. Look for patterns as these indicate your triggers.  Change/avoid the triggers you can (like caffeine for me) or learn to be aware when exposed to the ones you can’t avoid. (I have HUGE urges when I pay my bills but I can’t NOT pay them. Instead I am extremely aware of my hands while I am doing banking). NEVER GIVE UP.  So what if you start and stop 100 times? KEEP FIGHTING.  One day it may click. And perfection isn’t necessary. Just strive to be better today, than you were yesterday.
3. What inspired you to stop?
My daughter, Cosette, was three years old, and she caught me pulling. She asked me, “Mommy, what are you doing?” I questioned myself, what AM I DOING?  So she was my motivation to start changing. When things get tough, and I have an urge to fight (almost daily) I remember her, and how far I have come.
4. Has meeting Nate, who has a BFRB, made you think about BFRBs differently?
It hasn’t really changed my view other than it made me realize that hair pulling is not just a female disorder, and that regardless of our personal battles, true love is entirely possible. When I met Nate, he was pretty heavy into his picking and pulling. I have helped him control both of these better, and I think because we both have BFRB’s, we can connect on a deeper level. I’d still be in love with him if only one of us, or neither of us had BFRB’s. That is just HOW we met. (:
5. How has TLC helped you on your journey with BFRBs?
I didn’t know about TLC until Nate told me about them in 2013. He told me that there was a conference in NJ and that we should go. I immediately agreed that we should. I was so excited! TRICHSTERS? IN MY STATE? The best part about the conferences was meeting my Trich Family, and have made so many connections over the past two years. I really feel like I finally belong somewhere. I was about 6 months into my remission at the time of the conference, and Nate saw that there was a workshop to start a support group. I decided since I was already “coaching” people, that it would be a good idea to take the workshop.  I am SO glad I did. Forming the support group has changed my life, and I know it is changing the lives of the sufferers in my local community. TLC has been extremely supportive of my recovery and the path that I have taken so far. I am able to volunteer for them as an ambassador at the conferences  (I was part of the welcoming committee this year) and I am making phone calls to thank TLC’s sponsors. Because of TLC, I am able to redirect the focus of my life with BFRB’s and make a difference. TLC has helped me take the absolute worst thing that has ever happened to me, and redirect it in a positive manner. We WILL change the world, one head at a time. HEAD UP HANDS DOWN.
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Mackensie Freeman
Written by Mackensie Freeman, a 15 year old who is a member of TLC’s Millennial Task Force, and works to raise awareness about BFRBs in the community by speaking with national media about her experiences with BFRBs. Read her story at Gurl.com here.