A beauty therapist’s life changed completely after she was diagnosed with a rare life-changing condition that caused her lungs and skin to harden.
Georgina Pantano, 36, started experiencing terrifying breathing difficulties in 2012, at the age of just 27.
‘I’d wake up in the middle of the night gasping for air,’ she said. ‘It was actually very scary.’
Though based in Milton Keynes, Buckinghamshire at the time, she decided to take advantage of cheap medical treatment in Poland where her mum, Ewa Pantano, comes from.
She flew there hoping for a swift diagnosis – only to be horrified when she was told she had a rare condition that needed hospital treatment for 10 months.
Georgina said: ‘It was really traumatic. I didn’t say goodbye to anyone and was forced to quit the job I loved.
‘I understand Polish, but I don’t speak it very well, so I couldn’t even express myself in the way I wanted to during my treatments.
‘But I didn’t want to dwell on the negative. The doctors in Poland were amazing, they saved me.
‘My friends even flew out to visit and it really made me realise that I was surrounded by so many amazing people.
‘But in a flash my life changed.’
Georgina was diagnosed with diffuse systemic scleroderma, an extremely rare and incurable condition. It happens when the immune system attacks the connective tissue under the skin and around internal organs and blood vessels.
She was also diagnosed with pulmonary fibrosis, which occurs when the lungs become scarred and damaged, affecting their ability to absorb oxygen – making breathing increasingly difficult.
When she finally returned to the UK in May 2013, she was shadow of her former self.
Georgina said: ‘Before this happened, I was really sociable, I went out every weekend. I went to clubs, festivals and was living a really exciting life. I loved my job as a beauty therapist.
‘I had to completely readjust. I used to be the life and soul of the party and now I can’t even walk to my car from the shops.
‘I’d swapped nights out for hospital stays.’
Sadly, her condition has become progressively worse.
Georgina can no longer work and the lifestyle she once enjoyed is now a distant memory.
‘I still go out and try and enjoy nights out when I feel well enough, but I can’t work,’ she shared. ‘Just going to the shops is extremely difficult and needs a lot of planning.
‘I have to drive everywhere and sometimes if I walk too far I can’t get back. I’m in agony and just talking leaves me exhausted.’
‘I call the hospital my second home, as I’m there all the time for scans and tests.’
And, currently single, after a long-term relationship ended, she cannot imagine herself dating again any time soon.
Now Georgina is raising awareness of what she she says can be a ‘hidden disability’, particularly in memory of her dad, who recently died from Covid-19.
‘My condition is extremely disabling, but I feel like I have to justify myself all the time, as it isn’t immediately obvious to other people,’ she said.
‘I parked in a disabled bay going to the cinema and a woman came up and told me off for using it.
‘Luckily my sister was there and she defended me and explained the condition. But I was so anxious about it.
‘I get dirty looks all the time if I park in a disabled bay, or even use a disabled toilet.’
Scleroderma also affects Georgina’s gut, which means she has to rush to use the loo quickly.
‘A woman stopped me as I was about to go in and started questioning why I was using the disabled loo,’ she recalled.
‘I now use a wheelchair, as I can’t walk far at all and I get so anxious about what people are going to say. I just feel constantly judged and scrutinised, like people expect me to look sicker.
‘It’s extremely difficult. For a long time I struggled to leave the house, because people’s judgement made me so anxious.
‘I’m happy to say I’ve managed to overcome my fears, but I think people need to be mindful of hidden disabilities.
‘Just because I don’t look sick doesn’t mean I’m a liar.’
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