Imagine a person who has not sat down for 30 years!
A 32-year-old woman from Poland has not sat down in 30 years due to a rare medical condition.
Joanna Klich sat down when she was a toddler, according to her mother. However, she doesn’t even remember ever sitting.
She has a rare debilitating condition that has fused her hips to their joints and is terrified her legs will “fail at any moment,” making it impossible for her to stand.
The genetic condition has been loosely diagnosed as spinal muscular atrophy, which weakens muscles and impairs movement, as well as central core disease, which does the same.
“I can never sit down — all I can do is stand,” Klich told PA Real Life.
“My mum told me I sat down like a small child, but I don’t remember that. From what I can remember, I couldn’t sit or walk but I could do things for myself, like go to the toilet or get up from bed,” she said.
Klich’s condition wasn’t always so serious – she lived a “normal life” working and studying in Poland until she was 21 years old.
“I am angry that I can’t do what I used to do,” she said.
In 2011, she moved to Stoke-on-Trent in Staffordshire, United Kingdom, with her then-boyfriend when her condition got worse to the point of forcing her into a standing wheelchair. She still uses it daily.
She started a beauty business as a nail technician but started to struggle to walk as she grew weak and only had the strength to stand.
“I thought it was normal at first because I was standing for 15 hours every day, but my condition got worse and worse,” she recalled.
“I need help with all my daily needs. Even when going to the toilet, I have to have a specialized toilet. I am in pain every day because I have no support for my body weight and my knees are weak,” Klich said.
The 32-year-old worries that her condition will worsen but is struggling to raise the thousands of pounds via a GoFundMe account for medical costs.
“Physiotherapy would make me stronger, so my muscles will be stronger and won’t make standing so difficult. If I can get that I won’t need the surgery yet, where there is a risk I may not survive. I need help with all my daily needs. I am angry that I can’t do what I used to do,” she said.
“A few years ago, I gained 10 kilos and I couldn’t stand because I felt so heavy. I started a diet and even losing a few kilos, I felt amazing — and lost the 10 kilos soon after,” she said.
While growing up, she was not too bothered by her condition and remembers a time when standing wasn’t too difficult.
In 2016, Klich was forced to use a vertical wheelchair and stand aid to be held upright. Even standing is incredibly painful, as her body weight presses down on her weak limbs.
