AUTOIMMUNE AWARENESS MONTH: Spotlight on Ssc Patient Wyatt Wright

Nicola Whitehill avatar

by Nicola Whitehill |

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Wyatt Wright a.k.a (Wyatt The Warrior) is a 9 year-old young man who was diagnosed with Localized Scleroderma (linear) at the age of 8.

Wyatt takes 6 ½ tablets a day and a weekly chemo injection. He is also getting ready to have his second knee surgery in six months, due to scleroderma. He has frequent migraine headaches, GI issues that cause stomach aches and a loss in appetite, to name but a few symptoms.

Wyatt Weston Candace and friend

This is Wyatt with his mum, twin brother and friend at a Wyatt’s Warriors fundraising event.

Wyatt’s mum, Candace, says, “Yes, scleroderma has slowed him down, but he NEVER gives up. It took him out of football and baseball last year but we are back to baseball, with a team that understands he has down times and just can’t keep up. Wyatt also races Go Karts.”

Go Kart

Recently, Wyatt has been busy practising his catwalk strut, as he is going to be a part of “Models for Miracles” in Wichita, Kansas this weekend, April 2nd 2016.

www.modelsformiracles.com

“At its core, Models for Miracles is about mentoring, leadership development, and growing future givers. It is about providing opportunities for individuals to be engaged and connected to an event that is all about helping sick and injured children.

Every year, groups of volunteers from across North America come together to raise money for sick and injured children. The funds raised at these events stay within local communities to help sick and injured children and their families. Models for Miracles is growing and reaching more lives each year!”

‘We are using this as a way to bring awareness to scleroderma and raise money for local children facing big health challenges,” Candace continues. “Wyatt is a true Warrior and my Hero, he never gives up at life, and never lets it get him down. He faces everyday head on. I have learnt so much from him and I continue to learn.

I challenge you to take the time to educate one person a day on scleroderma and auto immune disease. I do it, can you?

Never let life get you down, always remember we are praying for you.”

For further details on the event and how to sponsor Wyatt:

http://www.modelsformiracles.com/event-details/?date_id=16

To view Wyatt’s profile for the event:

http://www.modelsformiracles.com/profiles/Wyatt123

To follow Wyatt’s progress and to read more about this very brave young man, please visit and like his facebook page: Wyatt The Warrior.

Scleroderma foundation conferenceSo what is Localized scleroderma?

The US based Scleroderma Foundation provides this description:

“Doctors divide childhood scleroderma into two forms with very different features: localized and systemic. Localized scleroderma is the most common form seen in children.  This form of the disease can damage the skin, muscle, bones and joints. It is unlikely to cause damage, however, to your child’s internal organ systems. Systemic scleroderma, often times, causes internal organ damage and may take a more severe course.”

http://www.scleroderma.org/site/PageServer?pagename=patients_juvenile#about

We will be supporting you from all over the globe Wyatt, and, huge thanks to you, for being so brave and sharing awareness about the autoimmune disease Systemic Sclerosis (scleroderma).

 

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About the Author

Nicola Whitehill avatar
Nicola Whitehill Having graduated with BSc Hons in Applied and Human Biology in 1995, I was working as a medical rep for Bristol Myers Squibb, when in 1997, aged 24, I was diagnosed with diffuse systemic sclerosis (scleroderma) and rayanuds and given a prognosis of 15 months, soon to be wheel chair bound. I was advised by my medical professional, at that time, to give up on my dream of being a barrister, and accept the diagnosis...... I did none of this! I changed my medical professional to international experts of the diagnosis (Dame Prof Black, and Prof Denton) and kept my dreams alive, qualifying as a practising barrister in March 2004. This prompted the medical decision to stop the 2g daily immunosuppressant routine of the previous 5 years, and unfortunately, within 8 weeks, I was forced to cease my 60hour working week and accept that the physical requirements of the role were too much for my body. I relocated to my family home town of Southport, UK. My full time job now, is to manage my symptoms to a controllable level. In 2013 I came out of the scleroderma closet to the world by way of the Daily Mail publishing my story with the headline 'The Real Life Tin Man' and since then I have devoted all of my spare energy to highlighting the plight of the scleroderma patient. In 2013 I became a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology. I am honoured to have been a member of the clinical team who compiled the NHS England treatment guidelines for digital ulcers. In 2013, I also became a patient expert with the European Medicines Agency as well as Eurordis. In 2015 I was delighted to be a UK patient advocate for the FESCA World Scleroderma Day event held at the European Parliament: https://www.youtube.com/watch?v=KQimB_F2l_4 . I am wholly committed to improving the patient landscape which this diagnosis brings, and I feel very blessed that my symptoms are mild compared to other Ssc patients, whose voices, I hope to include also. Other than being a Ssc parrot, I enjoy relaxing with my dogs and anything which makes me feel good, as one day I want to be able to say I am scleroderma and raynauds free.

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