Rare, Incurable Skin Hardening Condition Leaves Woman Struggling to Eat, Breathe and Walk

A former beautician has spoken of how a rare condition which causes her body tissue to harden has left her struggling to do daily tasks like eating or brushing her teeth.

Now 34, Georgina Pantano from the U.K. was diagnosed with diffuse systemic scleroderma at the age of 26, she told Metro.co.uk.

The ex make-up artist became worried about her health after suffering with swollen, stiff, and sore fingers for a year, as well as pain in her wrist, forearms, and hips. Her hands were cold, and would turn blue, she said.

Before long, Pantano would wake up at night unable to breath. Over time, her skin became red as if sunburned, and pus-filled ulcers formed on her fingers.

"Doing simple things like getting dressed was a real struggle," Pantano told Metro.co.uk. "My skin was tightening, I was losing mobility. I could feel weakness and fatigue in my muscles."

After 18 months of suffering symptoms that doctors couldn't put their finger on, she sought help in Poland and was diagnosed with the incurable autoimmune disease, according to the charity Scleroderma and Raynaud's UK.

"I felt excruciating pain, especially when it got cold. I could barely move," Pantano told Metro.co.uk. "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," she said.

Mostly affecting those aged between 40 and 50 years old, according to the U.S. Department of Health, the condition is characterized by hard skin on the fingers and face which can spread across the body. The disease can also make it hard to eat, causing weight loss.

Like Pantano, sufferers are also known to experience Raynaud's phenomenon, where blood vessels narrow, causing certain body parts to go numb in the cold or during stress.

It's unclear what causes the condition. As there is no cure, those diagnosed with the condition may be prescribed medication or undergo surgery to help treat their symptoms.

Following her diagnosis, doctors told Pantano the fibrosis had spread to her lungs, oesophagus and later her bowel. Medics advised Pantano to have chemotherapy three weeks over the course of a year, according to Metro.co.uk

In an interview with Scleroderma and Raynaud's UK, she said her family had to "almost force" her to go to hospital and start her treatment in Poland, where she stayed for a year.

"It has impacted my life hugely, I had to leave my job and put my career as a beauty therapist behind me," she said.

"Physically I can no longer use my hands the way I used to and chronic fatigue is a big issue and affects what I can do everyday."

Pantano told Metro.co.uk the hard tissue on her face makes eating tough, while that in her throat can cause food to get stuck. This can lead her to vomit when food isn't digested properly.

Her stiff hands, meanwhile, mean it is tricky to hold a toothbrush or unscrew a tube of toothpaste to to clean her teeth. Pantano's poor grip and fatigue makes it hard for the 34-year-old to shop for groceries at the store and then carry them home.

"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," she told Metro.co.uk.

"The tiniest knock is agony—so that is literally doing most things throughout the day," she said.

"As well as my body on the outside being affected which involves skin tightening and hardening to my face, arms and legs, I have joint stiffness, pain throughout my body, causing reduced and restricted mobility, muscle weakness and chronic fatigue," explained the former beauty therapist.

Now, Pantano must take drugs every day, including steroids and painkillers, and has regular check-ups at the hospital.

Pantano described sessions at the hospital to help her tight skin stretch out so she could walk properly as "agony."

"My skin felt like it was shrinking and hugely affected my mobility," she told Metro.co.uk.

The 34-year-old documents her experience with the disease on Instagram using the hashtag '#SclerodermaWarrior.'

View this post on Instagram

#SclerodermaAwareness : Eating..The struggle is real!😩😩 Today I just wanted to eat my magnum in peace 🥴🙇🏽‍♀️ but as soon as I opened it I thought.. Eeeep! Tough choice..this ain’t fitting in my mouth 🤦🏽‍♀️😐... #Scleroderma affects many parts of the body, my face being one of those parts..which means my mouth no longer opens normally. This photo is literally as wide as it will go, & if I’m having a fare up it can get even worse 🙈 Eating has become a real effort at times and can be really tiring. Personally I don’t really like eating in public anymore. Eating on the go.. hell no! All eating situations need some sort of consideration which is a real pain in the bum!.. especially when you just want to eat without any thought.. Damn it! 🤷🏽‍♀️🥴 Honestly, this is an area that can really stress me out. Depending on where I am, it can filled me with inner anxiety, feeling all flustered, really self conscious especially when there’s a lot of people around. The inner thoughts that I look weird because of my ‘scleroderma mouth’ creep in 🙊, worrying in my head that I’ll make an embarrassing mess 🤪🥴 or start choking because I can’t chew properly 🙈 Chewing has become something very difficult, if I don’t cut food up small enough I .. 1. struggle getting it in my mouth, then 2. struggle getting the food in between my teeth to actually chew 🤦🏽‍♀️ And there are the times it’ll just accidentally slip down my throat whole 😳 - and then I have an inner panic 😣 Otherwise, there are the many times that food just doesn’t want to go down at all and gets stuck 😏 (my oesophagus being affected causes the throat muscles to stop contracting as they should so food doesn’t go down as easily) causing the issue of vomiting 😖 - horrible and embarrassing 👎🏼🤦🏽‍♀️ Such fun stuff eh.. 😏🤷🏽‍♀️ My jaw muscles get tired and sore easily so whether it’s meals out or at home trying to pick things that are easier to eat, softer to chew and less drama is definitely the way forward.. The same as all things with scleroderma, accepting, adapting and taking it slow is the way we roll..✌🏼🙃💛🌻 #slowesteaterever 🥴 Oh and not to forget those dreaded mouth stretching exercises 🤪 Photos explain this part.. #therabite

A post shared by georginapantano (@georginapantano) on

She told Metro.co.uk: "I decided this illness would not beat me. I've been determined to keep as strong and positive as I possibly can."

Speaking to Scleroderma and Raynaud's UK, she urged those struggling to get diagnosed to "never give up, there's always someone to reach out to."

Dr. Fatima Ann Sulaiman, head of research and services at Scleroderma and Raynaud's UK, told Newsweek people with primary Raynaud's might see their extremities change color in reaction to a change in temperature. Those with rarer secondary Raynaud's will have more severe versions of these attacks, which can cause ulcers or wounds on their fingertips, and are more likely to develop autoimmune conditions like systemic scleroderma.

"In addition, for reasons we don't fully understand, systemic scleroderma affects up to five times more women than men," said Sulaiman.

"We recommend that if anyone thinks that they may have Raynaud's phenomenon, they should visit our website where they can take a quick online test to help them determine this," she said.

"However, importantly, if you have been diagnosed or think that you may have secondary Raynaud's phenomenon we highly recommend that you visit your GP and request the ANA [Antinuclear Antibody Test] blood test to help determine whether you may have an underlying condition."

This article has been updated with comment from Fatima Ann Sulaiman.