Charlie told his story at the 2018 PTEN Patient Day.
Charlie was diagnosed in 1992, at the time he had bad asthma. Charlie’s parents sent him to a Special Needs school. Charlie had multiple hospital visits to check out lots of lumps. Throughout Charlie was determined to stay positive, despite being bullied because of his headsize and because of his speech. One particular Doctor, James Fitzpatrick, was incredibly helpful and gave Charlie great encouragement.
In 2002 Charlie had an operation on his hand, there were complications and a nerve was damaged. Since then Charlie has had 25 operations on his arm over 20 years. All of this disrupted Charlie’s education and he missed a year of High School. He received excellent support from teachers and school friends and progressed to College. After College he worked at Glasgow Airport for 8 years, but had to leave due to his health problems. This made Charlie very low, but he has slowly rebuilt his life. He is currently considering having his forearm amputated so he can have a fresh start without chronic pain. Charlie’s aim is to get back to work by 2020 and is determined to make a success of his life.
Charlie’s message to everyone was that PTEN patients should reach out to others to get the support and encouragement they need. He thanked a number of people, health professionals and friends, who have given him great help at times of need.
The audience gave Charlie a rousing round of applause for sharing his story.