At the age of 21, Jake Ross Shaw from Edmonton, London, was diagnosed with Myopathy, an incurable hereditary muscle disease which does not allow his muscle fibres to repair quickly after exercise. As a result he experiences agonising pain and paralysis of the muscles, which – if left untreated –can lead to kidney failure and death.
The diagnosis might have been a big shock but it has not put him off. Despite his condition, Jake has not abandoned his aspirations and has stuck to the goal he had prior to being diagnosed: to work out, transform his body and improve his health.
Today at the age of 23, he lives in Edmonton with his Greek – Cypriot partner Marie and is trying, through the transformation of his own body, to raise money and awareness for all those suffering from muscle diseases like him.
Jake spoke to Parikiaki about this new journey he is about to embark on and explained how our community can help.
Jake pictured with his partner Marie(Left) and his godparents Antonakis and Toulla Kyriakides
Jake, how did your muscle problems start?
I was diagnosed with an incurable hereditary muscle disease in 2014, which was discovered after I went to the gym and did a one – hour workout. A few hours after the session, I became completely paralysed in my arms, unable to move them and was in agonising pain. I was rushed to hospital and after numerous blood tests was told that my CK (muscle damage levels – broken down muscle tissue) was at 30,000 instead of 100 which was the normal range.
I was later referred to a neurologist who diagnosed me with having an incurable hereditary muscle disease – a disease that causes my muscle fibres to repair slower than normal after exercise, causing them to become damaged or die and release into the bloodstream. This results to a reoccurring condition called Rhabdomyolysis. Failure to treat this condition results in kidney failure and death. Due to neurologists not being able to find a specific diagnosis for the type of disease I have, I am currently on the waiting list for the 100,000 Genomics Project – a research project that is studying the genetic make-up of patients with rare diseases and cancers – to discover if I have a rare disease.
How does this condition affect your routine?
It makes me feel extremely fatigued so it can be a struggle to force myself to keep moving, because all I feel like I want to do is sit down. If I try to lift anything really heavy, I then start getting cramps and weakness in my muscles.
Regardless of your condition you decided to take up a challenge which involves a lot of exercising.
Prior to being diagnosed with muscle disease, I had made a decision that I was going to workout and transform my body, my health and my vitality. This decision didn’t change just because I was diagnosed with Myopathy. Despite doctors telling me I cannot workout the way I want to, because my body can’t handle it and that they don’t know what kind of effect it could have on me, I’ve stuck to my goal and I’ve found a brand new motivation for succeeding: raising money and awareness for those with muscle diseases, who aren’t as fortunate as we are or I am and also proving to people and most importantly to myself, that you can achieve your dreams no matter what setbacks you think you face.
What exactly is the challenge?
For the next 18-24 months I am going to be doing a body transformation, taking myself from the skinny, weak ectomorph that I am now, to a muscly and strong physique. I want people to enter my world and experience this journey with me. I will be vlogging (video blogging) and sharing my experiences every week as this will allow my followers to keep up to date with me, my successes, my struggles and my challenges.
For example, the neurologists have been asking me for years to do a minor muscle surgery, which I’ve continued to refuse because I have a fear of any types of surgery. Since starting Jakes.Journey I have agreed to now do it. I will be filming it and documenting it through my YouTube videos. My vlogs will also include videos of me in the gym, sharing my food plans, reviewing supplements and much more.
Throughout this journey I will be raising money for a muscle disease charity called Muscular Dystrophy UK of which I hope to raise £10,000 for.
Who will be guiding you throughout your journey?
After months of extensive research, looking for a personal trainer whom dares take me on as a client, I have now found a personal trainer who believes in my cause and believes it can be achieved, and most importantly achieved safely.
Additionally, with the help of my sponsors and supporters SCI-MX (www.sci-mx.co.uk) a fitness supplements company and The Fitness Food Company (www.thefitnessfoodcompany.co.uk), an online fitness supermarket whom will be providing all my supplements and food through out the transformation.
How can our readers contribute?
They can show their support by making a £10 or £15 donation to Muscular Dystrophy UK through my JustGiving Page: www.justgiving.com/fundraising/jakes-journey and by following Jakes.Journey on YouTube: https://youtu.be/1nkJHvGLdyI . Their support will give me the best chances of raising money for my charity and succeeding through this transformation.
For more information on Jake and his journey visit the website www.JakeRossShaw.com or send an email to firstname.lastname@example.org
Jake would like to thank his partner Marie, Penny & Tony Antoniou, his sponsors and supporters SCI-MX Company and Muscular Dystrophy UK, The Fitness Food Company as well as the University College London Hospital. Get your Fitness Food today by visiting www.thefitnessfoodcompany.co.uk and using discount code JAKESJOURNEY10 for a 10% discount
By Mary Afxentiou