Brave teen living with Tourette's can't help but pull out her own hair BY Anita Merritt
A teenager with Tourette's, who is unable to stop herself from pulling out large clumps of her long hair, has pledged to shave it all off to help others with the condition. Every day, Caitlin Lord's life is affected by Tourette Syndrome, a condition that causes a person to make involuntary sounds and movements called tics. As well as having suffered hair loss from a physical tic that involves her pulling out her hair, the 19-year-old suffers from many other physical and verbal tics.
Caitlin, who is currently living in Exeter, is prone to making what she describes as animal and annoying noises, swearing, and saying random things in conversations. Her physical tics include neck jerks, involuntary leg movements and back tics which are so painful that last year she was admitted into hospital because her back seized up and she couldn't walk.
It was only two years ago that Caitlin was diagnosed with Tourette's, finally giving her peace of mind that what was happening to her was through no fault of her own. Her Tourette's started with facial tics when she was about eight years old, and since then she has developed more symptoms. She recalled: "When I developed facial tics my doctor said it was just a habit. The tics made me self-conscious at school and life more difficult. Society, in general, has not been understanding, but the church is the most supportive place I found.
Caitlin Lord's life is affected by Tourette Syndrome on a daily basis (Image: Caitlin Lord)
"When people think of Tourette's they always associate it with swearing, but actually only 10 per cent of people with it swear. "I suffer from physical tics with my legs so I have to carry crutches around. Recently I was on them for a couple of months. "For me, when I was diagnosed, it was finally an answer. About a year leading up to it I had started stuttering and I didn't know what it was and then I developed weird hiccups. I thought I was going a bit crazy. Knowing I had Tourette's made me realise I was not strange so it was kind of a relief."
Although there is no cure for Tourette's, Caitlin is due to start medication shortly which will hopefully relieve some of her symptoms, and she has taught herself to suppress a lot of her tics. Unfortunately, one she can't control is pulling out her hair and due to how much hair she has now lost it has prompted her to bravely shave off her hair on August 12 to raise awareness of the condition and raise money for Tourette’s Action, a charity that works to improve the lives of people with Tourette Syndrome and their families.
Caitlin said: "Pulling out my hair has always been there, but it is now more frequent and instead of little bits I now pull out quite big chunks. I can't do anything to stop it. I used to like braiding my hair when I had a big tic, but I can't do that anymore. "It has affected my confidence quite a bit. When I go out I wear a hat or cover it up, but I don't when I'm around 'safe people' because they are understanding and I don't feel the need to do so."
Caitlin, who is hoping for a career in ministry or social work, is currently in the midst of a gap year and is enjoying a PAIS apprenticeship at Riverside Church. Part of her role includes going into schools to talk about religion.
She said: "There is no cure for Tourette's so you just have to deal with it otherwise you wouldn't enjoy life. I don't let it get in the way of stopping me from doing things. I have an amazing quality of life, and I love what I do. "I feel like there is no support out there for people with Tourette's. I had to wait nearly two years just to get a neurologist appointment on the phone, and I was told I could go on medication."
Caitlin would also like people to become more educated about Tourette's so that those with the condition don't suffer discrimination which she says she has regularly endured throughout her life. She said: "I love Exeter; There seems to be much more awareness of hidden disabilities here. The experiences I have had up north are the complete opposite of what I have had here. People in Exeter are so lovely
"When people see me on the bus they might see me for 20 minutes and the chances of them seeing me again is unlikely, but I have to live with Tourette's 24 hours a day. I don't do it on purpose, I don't do it to annoy people and I don't want attention or people staring at me. I just want to get on with my life like everyone else."
https://www.devonlive.com/news/devon-ne ... nt-5718220
https://caitlinlord.blogspot.com/
To support her our youngest has also had his head shaved, although he did it a bit sooner because she had to change her date due to isolating up North with us, plus his hair need to grow a bit by the time he is back at school.
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