A FORMER dancer and gymnast has been left wheelchair bound due to a debilitating chronic illness.
Teenager Rosa Zagurskas from Studley – who can often be seen busking around Stratford – suffers from Myalgic Encephalomyelitis, also known as ME or Chronic Fatigue Syndrome.
The 16-year-old is one of 20,000 young people affected by the condition which causes severe and persistent fatigue along with a host of other symptoms including chronic pain and ‘brain fog’ – difficulty with concentration, thinking and memory.
Rosa said: “I am almost permanently in a wheelchair. I can’t walk very well, can’t see very well, I am always in pain, often vomit and feel sick, and I am so, so tired. My ambitions to become a dancer have become pretty much impossible.
“I was always quite active; I was a dancer and gymnast and I’ve always been very ambitious. For the first three years of having ME I was pretty much bedridden, was completely isolated and had no friends.”
Rosa is studying part-time for a college course in music performance but says the illness makes it difficult for her to keep up with her classmates.
She said: “I love to work and play music, and I get all excited when I have a new assignment or decide to learn a new song.
“I get so frustrated when everyone is ahead of me and it takes me a week to learn a song, and 45 minutes to just write a paragraph. I am still a keen musician and play flute, guitar, bass, piano, and I sing. I really enjoy it, but I can barely keep up with the work. The brain fog is so annoying.
“I have so many dreams, but I always fall short. I think that is the worst part about being sick.”
One in four people with the condition are so severely affected that, like Rosa in the early years of her illness, they remain bed or housebound. There is currently no specific test that can detect ME and no cure.
People with the condition can vary enormously in their experience of the illness, and also how long their symptoms last. Some make good progress and may improve, or recover, while others can remain ill for a number of years and may not get better.
Rosa is now well enough to attend college for a few hours each week, which she says helps her feel less isolated. She also busks when she can.
She added: “I’ve made so many great friends who don’t care that I’m ill and see me as a normal girl, and they help me out when I’m having a bad day with no fuss whatsoever. It really is great.
“Just holding on to the happiness I get when I’m with my friends, or when I’m playing a song, really helps me cope. Although I seem to be getting more ill by the year, things are looking up and I’m finally happy.”
