'I had a glamorous party life - tilI I woke up gasping for air'
A young beauty therapist was forced to swap glamorous partying for the hospital ward, after being struck down by a devastating condition that causes her lungs and skin to harden.
Now, she's keen to promote greater understanding of hidden disabilities like her own.
Back in 2012, Georgina Pantano, 36, was living the high life when she began to experience alarming breathing difficulties at just 27.
"By June 2012 I’d been feeling very breathless and getting bad chest pains for six months. I’d wake up in the middle of the night gasping for air. It was actually very scary.”
Her mum Ewa, 60, is Polish, so Georgina took advantage of affordable private medical care and flew to Poland hoping for a quick and easily resolved diagnosis.
Instead, they had her rushed straight to the Military Institute of Medicine Central Clinical Hospital in Warsaw after an initial examination.
To her horror, doctors revealed that she had a rare condition, and would need hospital treatment for 10 months.
She said: “It was really worrying. I was referred to a specialist and after further tests they diagnosed me with diffuse systemic scleroderma, that causes hardening of the internal tissue as well as the skin.”
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.
Now back living in Milton Keynes with her mum and brother, Richard, she said: “The doctors were so worried about my condition they told me to stay and have immediate treatment.
Read more: What Is Scleroderma—and How Can I Tell If I Have It?
As hospital doctors worked hard to stop her fibrosis from spreading, Georgina was forced to remain in Warsaw for 10 months for various appointments, living at a relative’s home.
She said: “I was given various treatments including cyclophosphamide, a chemotherapy drug used to surpress the immune system, to stop cells from growing, which would prevent the fibrosis in my lungs from spreading.”
“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.”
Georgina was supported by friends throughout her ordeal.
“My friends even flew out to visit and it really made me realise that I was surrounded by so many amazing people."
Watch: My hardening skin doesn't stop me being beautiful
Nevertheless, her life changed overnight.
Speaking out during Pulmonary Fibrosis Awareness Month, Georgina, who lost her dad, Alfredo Pantano, 60, a quality control officer, to Covid in October, 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.
When she finally returned to the UK in May 2013, she was a shadow of her former self.
“I’d spent more time in hospitals than I ever did in stylish nightspots.” she said.
Sadly, her condition has become progressively worse, and Georgina can no longer work.
“I’m not the party girl I used to be,” she said.
“I still go out and try and enjoy nights out when I feel well enough, but just going to the shops is extremely difficult and needs a lot of planning. I can’t do much. 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. I was passed to a specialist in the UK at the Royal Free Hospital in London when I returned from Poland and the care has been amazing all round.”
Currently single, after a long-term relationship ended, she cannot imagine herself dating again.
“Just the thought of trying to date with my condition is daunting. I’m just working on myself for now, as I feel exhausted by the very thought of trying to navigate meeting someone.”
Now Georgina is raising awareness of the condition, which she says can be a “hidden disability."
Read more: Getting Medical Treatment Overseas Saved Me Money
“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 affects my gut, meaning I need to rush to the loo very quickly and a woman stopped me as I was about to go in and started questioning why I was using the disabled loo.”
She added: “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.
"I think people need to be mindful of hidden disabilities. Just because I don’t look sick doesn’t mean I’m a liar!”
Georgina hopes to raise awareness of the conditions and help to educate others about living with hidden disabilities.
“While these kind of conditions are life changing, they haven’t stopped me from living life as fully as possible - and I want others in my position to do the same.”
For more information go to SRUK and Pulmonary Fibrosis Trust
Watch: Study finds how fibrosis progresses in the human lung
