I haven’t sat down for 30 years because of my painful, rare condition

A woman from Poland hasn’t sat down in 30 years due to a rare medical condition.

Joanna Klich, 32, sat down when she was a toddler, according to her mother — but she doesn’t remember ever sitting.

Klich 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 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 said.

But her condition wasn’t always so debilitating. Klich 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 symptoms worsened to the point of forcing her into a standing wheelchair, which she still uses daily.

“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.”

She 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,” she said. “If I can get that I won’t need the surgery yet, where there is a risk I may not survive.”

However, until then, her worries continue.

“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,” she lamented. “But if I was seated, I could do things normally and use both arms, because at the moment I have to use one arm to lean on things because of the weight on my legs.”

She also has to watch her weight due to her condition and weak limbs.

“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 shared.

Klich wasn’t too bothered by her condition growing up and remembers a time when life and standing weren’t too difficult.

“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,” she said. “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,” she added.

After graduating, Klich worked an administration job for a few years before moving to the UK. She adored the freedom and independence of her adult life in a new country — until her condition worsened.

“Moving to England was amazing,” Klich told PA Real Life. “I wasn’t at home; I was in a different country and I was independent and finally felt like an adult.”

She started a beauty business as a nail technician — doing nails, makeup and lashes — 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.

After a few years, in 2016, Klich was forced to rely on a vertical wheelchair and stand aid to be held upright. But even standing is incredibly painful, as her body weight presses down on her weak limbs.

“I can’t be independent,” said Klich, who said she counts on the support of her current loving boyfriend, personal assistant Dariusz Suchowiak, 46. “All the time, I need someone to help me with everything. I always have to have someone in my home helping me, to do everything from going to the toilet to getting into bed. I have no privacy.”

Klich also takes pain relief daily and uses a respirator to help her breathe at night because her lungs are weaker lying down. She needs assistance to cook and clean and complete basic tasks, like going to the bathroom.

The hardest part of her condition has been accepting that she can’t have children.

“I can’t be a mother. I started thinking about being a mother when I was 19. But I know that it would be very, very difficult in my condition and I could die,” she said.

“I love children, so this is a nightmare for me. I accept it more now, but it still upsets me.”

However, Klich remains optimistic as she continues to raise money for her therapy and works to finish her psychology degree.

“I still have dreams. I’d like to open a foundation for disabled people and teach psychology. I also dream of one day having my own flat that I can be independent in,” she said.

“So, I want to have the physio to find some independence again and feel like I can start to fulfill my dreams.”