Patient Stories

Back in 2014 I had a Sunday job at my local dressage yard, so when I began to have aches and pains in my right shoulder, I dismissed it as pulled muscles and ‘growing pains’. After Christmas, the pain hadn’t gone away, and more symptoms began to appear. The inside of my upper right arm was unmistakably numb, and I had begun to twitch quite vigorously. After our concerns had heightened the most worrying appeared: my right eye lid...

While Ewing’s sarcoma is a disease commonly associated with young adults and adolescents, that isn’t always the case. John Culshaw tells of his connection to Ewing’s, through his brother, David. Last year (2014) we lost my younger brother David to Ewing’s. He was 60 years of age. Ewing’s sarcoma is classed as a children’s disease and is extremely aggressive. The number of adults that contract the disease is in the order of 1 in 1,000,000 and unfortunately David was the one...

Nikki was diagnosed with Ewing’s Sarcoma in her pelvis in 2002, at the age of 16. I was diagnosed with Ewing’s in December 2002 at the age of 16 after finding a lump on my pelvis. I first noticed the lump in October and carried this burden alone for two months as I was too frightened to tell my parents. The day I finally told them was awful, although the relief I felt was enormous. After that day things happened very...

Charlotte was diagnosed in 2009, aged 4. In September 2009, 4-year-old Charlotte came home and complained of a sore ankle. We had just purchased a trampoline for her birthday and thought it was due to a twisted ankle, but it persisted and awoke her in the night. After visiting the GP, we were told it was probably an infection in the joint with an appointment for over a month’s time to see a Paediatrician at Warrington Hospital. Call it mother’s instinct,...

Iain was diagnosed with Ewing’s Sarcoma in November 2007, at the age of 11. Until September 2007 I was active and did lots of sport, I especially enjoyed being a goalkeeper. For about a year I had a sore right thigh – after a couple of days the pain always went away and then would come back a few months later. The doctors thought it was because of my flat feet and then because I injured my right ankle that...

Ruth was diagnosed in 1992 at the age of 15. At the age of 15 I began to get terrible pains in my leg. The pain was intermittent but when it did come it was excruciating and there was nothing, I could do to relieve it. This pain came and went sometimes lasting weeks at a time. At the base of my spine, it felt like there was a massive toothache, a deep consistent stabbing pain. A duller tighter pain with...

Mark was diagnosed with Ewing’s Sarcoma in his left femur in September 2010, and tragically passed away in April 2012. Mark was first diagnosed with Ewing’s Sarcoma on 29th September 2010 aged 10. His symptoms began only 8 weeks earlier when he complained of minor aches and pains in his left thigh. We dismissed these as growing pains, or a pulled muscle, as they weren’t too bad at that point. Mark was very sporty and active. He played football and swam...

Rebecca was diagnosed with Ewing’s Sarcoma in her right femur in September 2011, aged 23. I first started noticing pain in my right thigh on New Year’s Day, 2011. I was 22 at the time. I put it down to too much dancing the night before and ignored it. It went away, but then came back a few weeks later. It would last for a week or so and was so bad it often kept me awake at night. People always...

I was diagnosed with Ewing’s Sarcoma in November 2007. I was an extremely active 16-year-old, who assumed an innocuous tackle in a football match was causing the pain and swelling in my right heel. But after two months of investigations, I was told I had a rare form of bone cancer: Ewing’s Sarcoma. The next few weeks were a whirlwind of activity. I was diagnosed on a Friday, and on the Monday, I was expected at University College London Hospital...