Forty years on from her diagnosis, a woman has set up a Harrogate Lupus support group for local people to find support and hopefully comfort in hearing the experience of others.
Cherry Bratkowski was 23-years-old when she was diagnosed with the autoimmune disease. She’s now 61-years-old and over the years has experienced severe fatigue, rashes, liver and brain inflammation and numerous cases of pneumonia.
A main motivator for setting up the group for her was having to go through years of hospital admissions with her daughter, Tess Bratkowski, before she got an autoimmune diagnosis at 26-years-old.
Similar to her mum, Tess developed symptoms from the age of 12 but it has taken years of letters to MPs and consultants to get the right referral.
Ms Bratkowski is a professional musician and the resident pianist at the Old Swan, Harrogate. She said her diagnosis meant she couldn’t follow her original career path because she was too ill.
She knows other people will have similar experiences and hopes they could find comfort in sharing them with others:
“I’ve been very lucky in a lot of ways, I was told it was 80% unlikely that I could carry a child but I had two. But I’ve also been very ill, I just feel like there needs to be a lot more awareness.”
Lupus is thought to affect one in every 1,000 people but with no specialist lupus nurse at Harrogate District Hospital she believes there isn’t enough support.
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She said she had wanted to set up a group after the previous Harrogate group disbanded.
The musician plans to hold meetings at Woodlands Methodist Church Hall, with the first next Tuesday, May 24, between 1pm and 3.30pm.
Ms Bratkowski has worked with national charity Lupus UK to set up the group and hopes to encourage people across the district to attend.
“Watching my daughter brought it home to me how many people are suffering, whether its their medication side effects or isolation during covid it’s been very difficult for us.
“The help just isn’t there, people just don’t know enough about it even doctors and specialists.”
To contact Ms Bratkowski about the meeting, email [email protected].