A woman who has not sat down in 30 years because of a debilitating condition which has fused her hips to their joints is terrified her legs will “fail at any moment” making it impossible for her to stand.
Desperate to start specialist physiotherapy costing thousands of pounds, Joanna Klich, 32, last sat down as a toddler, but only remembers a life of standing or lying down, due to a rare genetic condition loosely diagnosed as spinal muscular atrophy, which weakens muscles and impairs movement, as well as central core disease, which does the same.
Despite her limitations, until she was 21, Joanna – who experiences daily pain -recalls living a “normal life,” studying and working in her hometown in Poland. But her symptoms worsened when she moved to Stoke-on-Trent, Staffordshire, with a boyfriend in 2011, where she remains and now uses a vertical wheelchair.
She said: “I can never sit down, all I can do is stand.”
She added: “I need help with all my daily needs. Even when going to the toilet, I have to have a specialised toilet.
“I am in pain every day because I have no support for my bodyweight and my knees are weak.
“I feel like my left knee will break soon and then I won’t even be able to stand.
“I won’t let myself imagine what life would be like only lying down.”
Despite briefly sitting as a toddler, Joanna – whose treatment is not available on the NHS and who has launched a GoFundMe page to raise money for her physiotherapy – has only ever known what it is like to do everything standing up.
Growing up with her mum, who is still in Poland and her father, who has now passed away, together with her two sisters in a small village, Joanna enjoyed her schooldays, at which point she only used a walker to help her move.
Joanna, who says surgery is available on the NHS for her hips, but is only available privately for her knees, said: “My mum told me I sat down as 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 added: “I would stand in class next to the school desk by my friend, but I never felt different. I had lots of friends and they never treated me any differently.
“When I grew older, I started to wish I could walk like other children, but I never minded not sitting, because to me that was normal.
“The hardest thing was when my friends would go dancing and I would have to stand and watch, because I couldn’t do it.”
After leaving school, Joanna had a job in admin for a few years, but moved to the UK when she was 21 in 2011, with her boyfriend at the time – loving the freedom of her adult life, before her condition became worse.
“Moving to England was amazing,” Joanna said.“I wasn’t at home, I was in a different country and I was independent and finally felt like an adult.
“I started a business as a nail technician, doing nails, make up and lashes.“But then I started to struggle to walk, because I was too weak and I could only stand.”
“I thought it was normal at first, because I was standing for 15 hours every day, but my condition got worse and worse.”
