What is scleroderma
An introduction to this complex and often challenging condition
"My first set of Raynaud's symptoms occurred when I was a teenager. I constantly felt cold and numbness in my hands and feet. The only way that I would feel better was to sit in the bath but even then my feet would turn black, white and purple. I did not know what it was and it started to worry me.
School was a real struggle as my feet were so painful and it hurt to walk around all day. I would never know what to say to people when they asked why my hands looked so 'weird'. I began to wear long sleeved thermal tops that would cover my hands as much as possible. The pain was excruciating and I dreaded the every day."
“The pain was getting worse and I really started to struggle. I went to my GP who didn't see anything wrong with me. I was so upset that they couldn't see what I was seeing. It took a few times of me going to the doctors before they finally referred me to a Rheumatologist in children's outpatients.
I had blood tests to rule out any other causes and in the summer I was told to keep a diary of symptoms. Looking back at what I wrote in the diary, I was really shocked to see that I was struggling so badly. I wrote 'my hands and feet are throbbing', 'my knuckles are purple', 'my hands are so painful', 'my finger is swollen' etc."
"The symptoms were endless and what worried me even more was that this was only in the summer! It felt like years before I was finally diagnosed. The hospital sent a letter to my GP explaining the condition and I was happy to have finally gotten some answers.
After a few more appointments at the hospital, I was given medication! I smiled from ear to ear and could not wait to try it out. I was given GTN patches, (glyceryl trinitrate) which slowly open my blood vessels to allow better circulation. I started off wearing 2.5 mg of the patch and now I have to wear 10mg for it to work effectively. Although there are side effects of migraines and dizziness, they have helped me so much. I continued to go to the hospital because they found a problem with my knee as well as lacking stamina in my hands. I was also told that I was hypermobile and very weak and that physiotherapy was the best option in order for me to be able to cope better."
"I still feared the journey to school as I found myself struggling to wait for the bus early on a January morning. I was using patches to regulate blood flow however the side effect of the headaches was rather annoying. As time went on I managed to keep my illness under control and I learnt quite a few tips along the way! Personally, the worst part of suffering from Raynaud's Syndrome was the pain in my joints and the swelling, which accompanied the sudden rush of blood when going from a cold to hot temperature.
"Since then, I have started attending University, studying Football Business and Media. Throughout my first year, I really defied the odds for someone suffering with a condition like mine. I played football for the university team in all weathers and regularly attended football matches too. Football matches are always a challenge for me as it gets so cold on the terraces and my anxiety creeps in, anticipating an attack. Despite this, it is something that I am passionate about and something that I live for, so I am not prepared to let anything stop me!
After a particularly cold month, which had me stuck indoors all of the time to avoid the frost, I booked a flight to Barcelona for a few days which really lifted my mood! 17 degrees Celsius had never made me so happy! It was a brilliant way to unwind before going back to university. After my break, I decided to take part in a charity event in aid of a homeless charity. This meant sleeping outside in a sleeping bag from 8pm to 7am. I knew this would be my biggest challenge yet but it was worth it and the moral support from friends really helped. I prepared as much as I could, including a blanket, thermals, a flask and extra layers. By the end of it, my fingers were yellow and my body felt numb, but nothing compares to the feeling of making a difference and completing such a momentous event.
Recently, I completed my first shift as a Wembley Connector, which involves up to ten hours outside of Wembley Stadium helping and directing customers. I wore two coats, thermals and a scarf as an attempt to keep as warm as possible! It was tough but it is a very enjoyable job and I am proud of my achievements despite such a debilitating illness, which is incredibly difficult to explain to people. Despite the challenges, I am confident that I can deal with my condition!"