Woman Suffering From Rare Medical Condition Hasn't Sat Down In 30 Years

A woman from Poland suffers from a painful condition which has left her unable to sit 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.

The now 32-year-old 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.

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¡°I can never sit down ¡ª 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.

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.

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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.

However, that's not all.

¡°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. 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 added.

She also has to watch her weight due to her rare and serious condition.

¡°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 ¡ª 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.

¡°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,¡± she added.

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.

¡°I can¡¯t be independent,¡± said Klich, who said she counts on the support of her current loving boyfriend, 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.¡±

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She also takes pain relief medication daily and uses a respirator to help her breathe at night because her lungs are weaker lying down.

¡°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," she added.

She is 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. So, I want to have the physio to find some independence again and feel like I can start to fulfil my dreams," she said.

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