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Woman who hasn’t sat down in 30 years because of a rare condition, desperately asking for help

Joanna Klich, 32, last sat up as a toddler just before her hips fused with her joints, making it impossible to bend, and is now raising funds so she can afford physical therapy

Joanna Klich, 32, in a standing wheelchair
Joanna Klich, 32, in a standing wheelchair

A woman who has been unable to sit up for 30 years due to a rare condition fears her legs could buckle at any moment, making her unable to stand up straight.

Joanna Klich’s hips merged with her joints as a toddler and only remembers one life in which she had to stand or lie down.

Medical professionals have dubbed the rare genetic condition spinal muscular atrophy, which weakens muscles and impairs movement, and central core disease.

After a life of standing, the 32-year-old fears her legs may soon not be strong enough to keep her upright. StokeonTrent Live Reports.

Now Joanna is dying to start specialized physical therapy, which will cost thousands of pounds.

Despite her limitations, Joanna recalls living a “normal life” until she was 21.







Joanna (left) as a small child with her sisters Magdalena and Anna
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Picture:

real life PA)







Joanna posed for a photo in 2003
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Picture:

real life PA)

Her symptoms worsened when she moved to Stoke-on-Trent with a friend in 2011 and now uses a vertical wheelchair.

She said: “I can never sit down, I can only stand.

“I’m in pain every day because I can’t support my body weight and my knees are weak. I have a feeling my left knee will break soon and I won’t even be able to stand. I won’t allow myself to imagine what life would be like if I just lay down.

“My mother told me I sat down when I was a little kid, but I don’t remember that. As far as I can remember, I couldn’t sit or walk, but I could do things for myself like go to the bathroom or get out of bed.

“I’ve stood next to my boyfriend at the school desk in class, but I’ve never felt any different. I had many friends and they never treated me differently.







Joanna, pictured with her grandfather, was unable to sit up as a child as her hips fused
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Picture:

real life PA)

“As I got older I wished I could walk like other kids, but I didn’t mind not sitting because that was normal for me.

“The hardest part was when my friends went dancing and I had to stand and watch because I couldn’t.”

After moving to England in 2011 when she was 21, Joanna started a business as a nail technician but began struggling due to the 15 hours a day she was forced to stand.

By 2016, Joanna had to start using a vertical wheelchair to support herself and get around, but even with that, the pain became so unbearable that she had to quit her job in 2019.







Joanna Klich is now raising funds for physical therapy
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Picture:

real life PA)







Joanna, 32, with her boyfriend Dariusz Suchowiak, 46
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Picture:

real life PA)

She now relies on her vertical wheelchair and standing aid to stay upright, but is in daily pain as her own body weight presses on her weak limbs.

Joanna also needs a ventilator to help her breathe at night because her lungs are weaker when lying down.

She also had to come to terms with being unable to have children with boyfriend Dariusz Suchowiak, 46, due to her condition.

Fearful her legs will soon give out and she will be unable to stand, she is raising £6,000 for private intensive physical therapy which she hopes will take the strain off her muscles and avoid risky surgery.

Joanna added, “Physical therapy would make me stronger, so my muscles will be stronger and won’t make standing that difficult. If I can get that, I don’t need the surgery yet as there is a risk of not surviving.

“But if I were sitting I could do things normally and use both arms because right now I have to lean with one arm because of the weight on my legs.”

To donate to Joanna’s treatment, Click here .

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https://www.mirror.co.uk/news/uk-news/woman-who-not-sat-down-26942080 Woman who hasn't sat down in 30 years because of a rare condition, desperately asking for help

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