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Talking Tourette's with Paul Stevenson

It's Tourette Syndrome Awareness month and we wanted to share some some short interviews with the Tourette's community. We caught up with our friend, Paul Stevenson.

Paul is an Tourette's Ambassador for Genius With CIC. He works hard to raise awareness and educate the public through through public speaking, his social media presence, and his wonderful photography work.

Photo of John Davidson holding his MBE medal and his black labrador Suki
Paul Stevenson

How did your Tourette's first present itself?

I now realise I have had TS all my life, from grimaces, leg drop tics, saying inappropriate things, sniffing, and throat clearing, but all went unnoticed.

What age were you when you were first diagnosed?

I didn't get diagnosed until I was 46 yrs old after experiencing a lot of emotional trauma and PTSD.

Do you have any family members who also have TS?

Yes, my oldest daughter, Rebekah who is 34 years old, has tics, my son Harvey aged 14 started with both motor and vocal tics in March last year, and only recently I was informed that my granddaughter who is 15 years old started with motor and vocal tics last month. So there you go - three generations of awesomeness :-)

What, if any, coexisting conditions do you have?

I am diagnosed with Tourette Syndrome Plus, the plus being ADHD, OCD, Sensory Processing Disorder.

What is the most challenging part of your Tourette's?

Most challenging apart from a secondary disability occurring, because of tic'n and dislocating my shoulders and knees, are the ADHD and sensory issues that act as massive tic triggers.

Can you share any positives to having Tourette's?

There are lots of positives. I love the creativity that I have discovered since my diagnosis, lots of opportunities have arisen due to doors opening via raising awareness. I meet lots of lots of wonderful people and even started a totally new career.

If you could tell your newly diagnosed self anything, what would it be?

Don't panic, you are not alone, try and not fight TS and embrace TS as much as you can. You are not broken and don't need fixing.

If there was one thing you wished everyone knew about Tourette's, what would it be?

That TS is not a rare condition, there is no cure, no specific medication yet designed for TS, but there is acceptance and understanding. Empathy not Sympathy!

Thank you Paul!


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