Woman Who Hasn't Sat Down In 30 Years Is Desperate For Help
A woman who’s been unable to sit down for 30 years due to a rare genetic condition is now desperately seeking medical treatment.
Joanna Klich last sat down as a toddler after her hips fused to their joints, with doctors loosely diagnosing her with spinal muscular atrophy and central core disease.
Both conditions make muscles weaker and cause problems with movement, with the former getting worse over time.
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The 32-year-old, who lives in Stoke-on-Trent, said her condition took a turn when was 21 and now lives in daily pain, resulting in her having to use a vertical wheelchair.
Speaking to StokeonTrent Live, she explained: "I can never sit down, all I can do is stand.
“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 body weight 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."
After moving to the UK in 2011, Joanna recalled living a ‘normal life’, although she struggled working long hours as a nail technician.
She continued: "Moving to England was amazing. 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."
As her condition deteriorated, Joanna started using a vertical wheelchair in 2016 but even with this the pain was extreme and she had to give up work in 2019.
Alongside pain medication, Joanna launched a GoFundMe to help raise money for physiotherapy and she also needs a respirator at night as her lungs are weaker when lying down.
While she’s grateful for her supportive partner, Joanna explained that she can’t have children, stating: "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.
“I love children, so this is a nightmare for me. I accept it more now, but it still upsets me.
"I can't be independent. 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."
For now, Joanna is trying to stay positive and she hopes to raise enough money to pay for private intensive physiotherapy.
"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.
"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."
While she’s unsure of how much surgery for her hips and knees would cost as not all of the treatments are available on the NHS, Joanna needs to raise £6000 for the physiotherapy.
She finished by saying: "I am angry that I can't do what I used to do. I didn't feel like I was disabled until I turned 21.
“But I still have dreams. I'd like to open a foundation for disabled people and teach psychology."
If you’d like to donate to Joanna’s GoFundMe page, click here.
Daisy Phillipson