Spotlight Story Program: Sophie Ward’s Story

Meet Sophie Ward

When life brought health challenges into British 24 year old Sophie Ward’s life, ending her dreams of trying out for the 2012 London Olympics, she used her fighter athlete spirit to get to the bottom of her struggles. After a diagnosis of Lyme Disease, Sophie not only focused to improve her health, but worked around the UK with Parliament, on radio/television, and with her blog to bring awareness to Lyme Disease education and prevention. She’s a kind and passionate young women, inspiring others to find their inner empowerment. And as an InvisiYouth Global Brand Leader, Sophie uses her advocacy and philanthropic skills to bring positive change to our international older youth crowd. 

In August 2008, my family and I travelled to Beijing to watch the Olympics. Many of my friends were competing in the swimming events and my dream was to reach London 2012, so it was a perfect opportunity to soak up the atmosphere, support my friends and learn what to expect. Once the Olympics were over we decided after traveling all that way it would be silly not to sight see. So, we did! We were lucky enough to go to the Panda sanctuary and it was AMAZING.

Here is where my nightmare started. I began with a fever after seeing the pandas. I was treated at the time with 48 hours of antibiotics which seemed to do the trick.

On returning home, I was forced to give up my swimming career due to nerve damage after an umbilical hernia operation. I felt lost. The years went on and my health declined; weight loss was the result was increasing food intolerances, migraines, joint pain, muscle weakness, blurred vision, confusion, muscle pain, fatigue, insomnia, temperature sensitivities, itchy skin, rash, nausea and so on. There seemed to be a new symptom every week. I saw doctor, after doctor, after doctor. All of them passed me on to the next or called me crazy.

I was losing the will to keep fighting. Was I crazy? Was it me? My family questioned my health too. Sometimes asking me directly if I was the cause of my health issues and to ‘snap out of it.’ How could I ‘snap out’ of something I zero control over.

2017 began and after going to the hospital for food intolerance tests, the consultant suggested I  see someone who specializes in CFS (Chronic Fatigue Syndrome) as at lot of my symptoms matched. The consultant gave nothing away at the time. He just told me to do some blood samples so I did, and returned a month later for the results. We were shocked. I looked at my Mum confused, she grabbed my hand.

I knew for so long I’d been struggling but I still coped. Feeling a bit off didn’t mean I would lay in bed all day. My professor read my results out to me. That stated I had very active Lyme levels and Coxsackie virus. Along with Epstein Barr virus and Herpes 1,2 and 6. At first, we thought FABULOUS a diagnosis… how do we cure it?

Then Lyme disease and the other viruses were explained to us. This fight would be for life, a life-long struggle. The fight would become my life.

I returned to my GP (general physician) with the results and they told me I was crazy, I had an eating disorder because my weight was so low, and I would have to suffer with a ‘chronic disease’ for it to stay so low. They told me my results were false because they had been carried out above and tried to section me. The consultant however, couldn’t find any grounds on which to section me. I was perfectly sane.

I did try inpatient help on my own accord for my eating. It was an utter disaster! I lost 5.5lbs in just 6 days! They starved me on a liquid, low calorie diet and then bombarded me with everything I was intolerant too. I was so sick and hungry. I was forced to discharge myself. This proved to my GP it wasn’t me, it wasn’t my fault and I was perfectly sane. This battle will be is endless and there is no rest.

My health journey has made me PASSIONATE about helping others who are going through similar situations, trying to raise awareness about Lyme disease to prevent people from going through this hell.  A cure, even though we fight for one everyday is a long way of yet. Prevention is key to save future generations and loved ones from the disease at this point.

I am part of the Lyme Discussion UK Administration team and work closely with my local MP (Member of Parliament) to raise awareness on Lyme Disease. I hope my journey and story inspires many who suffer with a variety of chronic illnesses and that we never feel ALONE OR INVISIBLE as our illnesses can often make us.

I strongly believe knowledge is power, so I continue to learn and gain knowledge through meeting people, talking, listening and reading.

People are the best form of lessons and knowledge. Listening is SO important, people relate, people feel less alone and less alien. We pick up hints and tips, look down different paths and doors open.

My work with the Lyme Discussion Group has helped me understand the political fight we face, meet likeminded-people, gain advice, knowledge and FRIENDS. In my work, I have offered support to people who no longer want to keep fighting. My family has fought to have signs and poster placed around Residential and holiday parks across the country and I have my local MP fighting and pushing Government for better tests, treatment methods, research and awareness information.

I am also a Global Brand Leader also work with InvisiYouth Charity!

I hope to make friends, gain further knowledge and help people like myself who often feel LOST, worthless and crazy. I hope to inspire people to find a purpose when there doesn’t seem to be one and celebrate all the victories and pleasures in life to boost our moods and keep us fighting.

And my blog, Sophantastic, has been my own personal journal. A journal to store my research, new knowledge, treatment stories, personal struggles and medical issues with the world in hope that others can relate, and we can find comfort in not feeling alone in our struggles.

I won’t let the world change me, I must change the world. And I must change the world to become more accepting.

So many of us have battled years with feeling like we are ‘alien’ and don’t belong. Just because we are poorly it doesn’t mean we can’t reach our dreams, we can’t make a difference and we are crazy. Our dreams and goals may have to be altered but the constant ignorance and dismissal in the health industry for people with chronic illnesses and chronic disease is not acceptable or healthy.

Society needs to learn to not see our weaknesses in a negative light but as stepping stones to learn and gain strength from. To add power to our strengths. This simple change would help improve lives because everyone knows a strong mind is the best weapon.

My life with Lyme Disease has inspired me to become the stronger person I am today. I have felt pain beyond my limits and become grateful for every moment.

It has taught me that nothing can hold us back, only WE hold us back. We have the power to change the world, empower and inspire people all around the world.

Spotlight Story Program: Shona Cobb’s Story

Meet Shona Cobb

Breaking the stigma-ceiling for chronic illness and disability comes to second nature to British 20 year old, Shona Cobb. She’s used her experience of life with Marfan Syndrome to empower others living with disabilities and illnesses, and change the way businesses, media and society treat disability. Shona uses her successful blog and speaking on TV and radio around England to bring change to disability rights, and as an InvisiYouth Global Brand Leader, Shona’s advocacy can reach an international stage. 

‘Is there a cure?’ is a response I get time and time again when explaining my rare condition to everyone from friends to strangers in the street. Perhaps if I were diagnosed as a teenager, or even an adult, the realization that there is no cure for my condition would have been a difficult one but knowing all my life that I have a genetic condition has given me a long time to come to terms with my prognosis.

Marfan Syndrome is the name of my primary condition, the starting point for all my secondary conditions. It’s a genetic connective tissue disorder, with my Mum having passed it on to me, and it can be visible quite far back in our family tree, with 2 family members dying from associated complications during my lifetime. A daunting aspect of this multi-systemic condition.

Long limbs are one sign of the condition and my unusually long arms and legs were visible on ultrasound scans while my Mum was still pregnant with me. Officially I was diagnosed as a toddler, when I started to meet more of the criteria, but my Mum knew that I had inherited Marfan a while before that.

For most of my childhood I was a happy, energetic child. I had hypermobile joints that I would show off to my classmates and I got ‘growing pains’ a lot more than my peers. Unpleasant but not unmanageable. It was as a teenager that more serious problems started appearing. I found myself missing more and more classes to attend hospital appointments, and the reality of my condition started to sink in. It wasn’t just something I happened to have anymore, it was affecting my daily life.

I was diagnosed with Scoliosis, a curve in my spine, at 13 years old and by 15 I was unable to climb the stairs at school, finding myself doing worksheets in the library instead of joining my classmates on the top floor of the main building.

It was isolating and really affected me because I loved education and learning, I thrived at school and worked hard. So, when I was booked in to have surgery to correct the curve with titanium rods and screws I was over the moon at the prospect of some relief from the back pain. I blogged about my experience, with my Mum keeping a diary of my first week in hospital, which proved to be a good idea as I barely remember that week. I even documented my experience with a complication post-surgery and finding out that I would need a second surgery. That was the beginning of me using my experiences to educate and support others, and it was also the start of my body beginning to crumble.

By 18 I’d had one hip replaced and the other being on its way to needing the same, a difficult thing to get your head round when joint replacements are so often associated with elderly people. I really thought that after my spinal surgery, I would return to life as normal. Then after my hip replacement, I was sure that was it, I’d surely endured enough. It was downhill from there though and now, at 20 years old, I’m a powerchair user with a large cyst at the bottom of my spine being my current issue.

It’s incredible how humans adapt, after every surgery I believed it was over, I believed I could not cope with anymore but again and again I proved myself wrong. Resilient, that ‘s what people would call me. I believe though that we all deal with the hand life gives us in whatever way we can, everyone has struggles and mine happen to be health related. Others deal with grief, violence, homelessness, the list goes on. I was determined to take the hand I’d been dealt and make the best of it.

It would take me all day to list everything I’ve been involved with in the past 2 years. I’ve used my blog and social media to raise awareness of Marfan Syndrome and educate people on disability issues. I’ve talked about how environmental movements can affect and exclude disabled people on the news. I’ve been involved with a national newspaper’s project to document the daily access problems I come across as a powerchair user. For someone who was painfully shy as a child, I’ve certainly come out of my shell, and that is all down to me having a chronic illness and being disabled. I feel I’ve found my calling in life. I’m not currently able to work but I can use my free time and my voice to help raise awareness and make real change.

I’ve helped local shops install ramps to improve access for disabled people and I’ve worked with organisations to improve their inclusivity. Charity work is something I’ve passionate about though, being the Marfan ambassador for The Hypermobility Syndromes Association (HMSA) and being the youngest person in a British Heart Foundation (BHF) patient advisory group. I’ve taken what life has given and done my best with it.

People often speak about disability and chronic illness as though it’s the worst thing, but I feel empowered by disability. I am proud to be a young disabled woman, I am proud of the change I’ve made and am trying to make in this world. Being disabled and chronically ill is a huge part of my identity, why shouldn’t I be proud of that?

I hope to inspire other disabled and chronically ill people to be empowered by their conditions too, as many other disabled activists and campaigners have done for me. I scroll through my Instagram feed and I feel empowered to see so many disabled people not being ashamed of their disability and embracing their bodies.

I’ve still many rocky roads ahead of me, including major open-heart surgery and potentially more risky spinal surgery, but I still look forward, looking back at the past, at a life that could have been, has never done me any favours. I’m looking forward now, looking forward to the change I can make in the world, looking forward to being more confident and looking forward to a time where disabled and chronically ill people can feel empowered by their disability without others telling us we shouldn’t.

I’m excited to fulfill these goals and support others, especially in my new role as a Global Brand Leader for InvisiYouth!