Since Georgina Pantano, 34, was diagnosed with diffuse systemic scleroderma – a rare condition that causes the hardening of the skin and issues within the organs – every part of her life has changed.
Her condition has made it difficult for the former beauty therapist, who had to quit her job after experiencing symptoms, to eat, breathe and walk.
The illness causes her near-constant pain and regularly puts her in hospital. There is no cure.
Georgina was diagnosed just a few weeks before her 27th birthday, after experiencing a year of cold hands that turned blue while she worked at a salon, swollen fingers that felt sore and stiff, aching in her wrists and forearms, and severe pain in her hips.
She went back and forth to her doctor but was dismissed as a hypochondriac or told that her pain was simply due to repetitive strain injury as a result of cutting hair.
Then came the breathing problems, which left Georgina waking up in the middle of the night gasping for air. Her skin turned red and inflamed, as if she had sunburn, and pus-weeping ulcers developed on her fingers.
Soon her hands were stiff, curled, and excruciatingly painful.
‘Doing simple things like getting dressed was a real struggle,’ Georgina tells Metro.co.uk. ‘My skin was tightening, I was losing mobility. I could feel weakness and fatigue in my muscles.
What is scleroderma?
Scleroderma is an uncommon condition that results in hard, thickened areas of skin and sometimes problems with internal organs and blood vessels.
Scleroderma is caused by the immune system attacking the connective tissue under the skin and around internal organs and blood vessels. This causes scarring and thickening of the tissue in these areas.
It’s thought scleroderma occurs because part of the immune system has become overactive and out of control. This leads to cells in the connective tissue producing too much collagen, causing scarring and thickening (fibrosis) of the tissue.
There are several different types of scleroderma that can vary in severity. Some types are relatively mild and may eventually improve on their own, while others can lead to severe and life-threatening problems.
There’s no cure for scleroderma, but most people with the condition can lead a full, productive life. The symptoms of scleroderma can usually be controlled by a range of different treatments.
– NHS
‘I felt excruciating pain, especially when it got cold. I could barely move.
‘It was extremely frightening as I had no idea what was going on.
‘Looking back, it’s crazy to think how much pain I put up with.’
The lack of answers in the UK led Georgina to travel to Poland, where her mum was born, to talk to more medical professionals.
Georgina remembers: ‘My train of thought was have a few simple tests done, I could then take these results back to my doctor in the UK and be given the medicine needed to fix the issue, then get on with life as normal.
‘I was so wrong.’
In Poland Georgina was told that she had scleroderma, and that the condition had spread internally through her lungs and oesophagus. She need to have chemotherapy every three weeks for the next year.
At the time she was diagnosed, Georgina had no knowledge of scleroderma, an incurable, debilitating chronic illness that has effects that go far beyond outward appearance.
‘It’s my lungs that were affected first and most of my digestive system including my oesophagus and then my bowel,’ she says. ‘As well as my body on the outside being affected which involves skin tightening and hardening to my face, arms and legs, I have oint stiffness, pain through out my body, causing reduced and restricted mobility, muscle weakness and chronic fatigue.’
The hardening and tightening of the skin around Georgina’s face often means she’s unable to open her mouth widely enough to eat, while the inflammation, pain, and hardening of her lungs and throat make breathing an immense struggle.
Her hands and wrists are in constant pain, making it difficult to use them day-to-day, and physical contact can be excruciating.
‘I tend to use my elbows to push myself up but the constant friction of doing this can cause ulcers to develop on my elbows, which then makes things harder and more painful,’ Georgina says.
‘Brushing my teeth is difficult. I find it hard just holding the toothbrush because of the stiffness in my hands. Small things like unscrewing the toothpaste lid are tricky, and because my mouth can not open wide anymore due to tightening of the skin and muscles I have to use a baby toothbrush just to be able to get the toothbrush inside my mouth. Getting to the back teeth is very difficult and always painful.
‘Turning taps is really difficult and can be extremely painful on my fingers, especially when I have flare ups of digital ulcers, joint pain and overall sensitivity to the skin.
‘The tiniest knock is agony – so that is literally doing most things throughout the day.
‘Scleroderma has affected my oesophagus, so the muscles in my throat no longer work efficiently, meaning when I eat food can get stuck in my throat very easily. I suffer from a lot of vomiting when certain foods don’t go down properly.’
Her illness has visible symptoms, – including sore, red skin, swelling and stretching of the face, and blistered hands that she cannot close into a fist – which means she sometimes receives looks and negative comments.
Of course, other parts of her illness are invisible, and so her disability is often dismissed.
Georgina sometimes needs to use a wheelchair or walking stick, but not always. Scleroderma also affects her bowels, meaning she needs to use disabled toilets, and receives judgement from people who don’t think she ‘looks’ unwell.
Georgina believes that scleroderma isn’t commonly understood, and hopes that by speaking openly about her story she’ll change things for others struggling.
‘When I was diagnosed I felt very overwhelmed,’ she says. ‘I couldn’t really process the information to begin with.
‘Being told I had an incurable, life changing condition was something I never thought I’d hear. I was very much in denial and angry to begin with.
‘To look at me you can barely see that anything is wrong. This was something I found really hard to come to terms with at the start and I still get frustrated at times because it almost feels like I live in chronic illness limbo. I don’t fit into what is mostly thought of as ‘disabled’.
‘It can be difficult to get across how an illness that isn’t immediately visible can so debilitating.
‘There have been a few times were I’ve had to deal with dirty looks for parking in a disabled parking space using my blue badge.
‘Unless I have my walking stick or wheelchair I look like I’m taking advantage, when I’m honestly not.’
Following a year of chemotherapy, Georgina has had to undergo multiple treatments to reduce the symptoms of diffuse systemic scleroderma.
She currently has regular infusions of Iloprost, a drug that relaxes arteries and improve blood pressure, and takes daily suppressant drugs, steroids, painkillers, and medication for severe acid reflux.
The 34-year-old also needs to go into hospital for regular checkups, scans, and lung function tests, as well as managing flareups when they occur.
It’s important to note that while treatments can reduce symptoms and Georgina’s levels of pains can change day-by-day, there is no cure for scleroderma – it’s a chronic condition that causes her constant pain.
Georgina tries to stay positive and keep going with the treatments that seem to help.
‘With my skin getting tighter and tighter we had to stretch everything out again and get me walking properly again,’ she explains. ‘These sessions were complete agony but worth it in the long run. My skin felt like it was shrinking and hugely affected my mobility.
‘Now I have weekly deep tissue massages. The tension and stiffness can change from week to week but it always helps and with the increased blood flow it really helps to keep my skin as supple as possible.
‘I’m extremely lucky to have such a strong support network around me. My family and friends have always been amazing and have never made me feel self conscious about anything when I’m with them. They make sure I never miss out on anything and will think of ways to adapt so I can join in.
‘It’s the little things that I get most self conscious about – like my hands, with them being less mobile and if I’m on my own I get an inner panic whenever I need to handle money, for example. It’s something so simple but when I get to the till I always have a inner panic, I struggle picking out coins from my purse and I’ll most likely drop something and struggle picking it up again.
‘My grip is terrible because I can’t completely close my hand into a fist so things just drop out of my hands all the time. Being extra slow with packing I panic that people are watching. I don’t even look at anyone in the queue because I feel embarrassed.
‘I can get very self conscious in the supermarket- unable to pick tins, bottles because of my grip and stuff hands. I am unable to carry too much as I physically don’t have the strength. Just very short trips to the shop will completely exhausted me.
‘Then there’s technology – I can’t use touch screen like everyone else. It’s meant to make life easier… well, not for someone with scleroderma The curved fingers don’t help. Also because of the ulcers I get on my finger joints using my knuckles can be extremely painful.
‘I try to push through my insecurities and tell myself it’s what going on in my head that’s the toughest part I feel really self conscious, especially when eating is involved. I’m constantly panicking something might not go down right and will get stuck or that I look strange because I can’t open my mouth normally.’
‘Meeting new people sometimes makes me feel quite anxious, the question – ‘so what do you do?’
‘At the beginning I would get myself so worked up about this because my life was no longer ‘normal’, unable to work because of an invisible illness but looked absolutely fine.’
Georgina now shares her experiences of scleroderma on Instagram in an attempt to raise awareness of the rarely discussed condition and provide support to others suffering.
‘I’m happy to talk about living with scleroderma to whoever wants to listen,’ she tells us. ‘Raising awareness is so important to help improve understanding.
‘You can never judge a book by its cover, and living with this illness has definitely made me more compassionate and empathetic towards others.
‘I hope being more open and honest can help spread that compassion and understanding.
‘I’d be lying if I said this hasn’t been a tough journey mentally. I’ve definitely had my ups and downs and times I’ve been so low, feeling so physically and mentally exhausted I just wanted to give up.
‘I decided this illness would not beat me. I’ve been determined to keep as strong and positive as I possibly can.’
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source https://metro.co.uk/2019/10/12/excruciatingly-painful-skin-hardening-condition-scleroderma-leaves-woman-struggling-eat-breathe-10896091/
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