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.'

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.