Ever since Georgina Pantano, 34, was diagnosed with diffuse systemic scleroderma – a rare condition that causes skin hardening and organ problems – every part of her life has changed.
Her condition made it difficult for the former beautician, who had to quit her job after having symptoms, eating, breathing and walking.
The disease causes him almost constant pain and places him regularly in the hospital. There is no cure.
Georgina was diagnosed a few weeks before her 27th birthday, after having a year of cold hands that turned blue while she was working in a salon, swollen fingers that looked painful and stiff, pain in her wrists and forearms and severe hip pain. .
She went to her doctor, but was referred for hypochondriac or was told that her pain was simply due to repeated microtrauma as a result of a haircut.
Then come the breathing problems that cause Georgina to wake up in the middle of the night, out of breath. Her skin turned red and inflamed, as if she had had a sunburn and sore ulcers developed on her fingers.
Soon her hands were stiff, curved, and extremely painful.
"Doing simple things like dressing up was a real fight," says Georgina at Metro.co.uk. "My skin contracted, I lost my mobility. I could feel weakness and fatigue in my muscles.
What is scleroderma?
Scleroderma is an uncommon condition that causes hard, thickened skin areas and sometimes internal organ and blood vessel problems.
Scleroderma is caused by the immune system that attacks the connective tissue under the skin and around the internal organs and blood vessels. This causes scarring and thickening of the tissue in these areas.
Scleroderma is thought to occur because part of the immune system has become overactive and uncontrollable. This leads the connective tissue cells to produce too much collagen, which causes scarring and thickening (fibrosis) of the tissue.
There are several types of scleroderma whose severity can vary. Some types are relatively light and may eventually improve on their own, while others can cause serious, sometimes fatal, problems.
Scleroderma can not be cured, but most sufferers can lead productive and fulfilling lives. The symptoms of scleroderma can usually be controlled by a range of different treatments.
"I felt an excruciating pain, especially when it was cold. I could barely move.
"It was extremely scary because I did not know at all what was going on.
"Looking back, it's crazy to think about the pain I endure."
The lack of answers in the UK led Georgina to visit Poland, where her mother was born, to talk to more health professionals.
Georgina recalls, "My thoughts were simple. I could then report these results to my British doctor and receive the necessary medications to resolve the problem and then resume a normal life.
"I was so wrong."
In Poland, Georgina learned that she had scleroderma and that the disease had spread internally through the lungs and esophagus. She must undergo chemotherapy every three weeks during the next year.
By the time she was diagnosed, Georgina did not know about scleroderma, a chronic, incurable and debilitating condition that goes far beyond her appearance.
"It's my lungs that have been affected first and most of my digestive system, including my esophagus and then my gut," she says. "In addition to my affected outer body, which involves tightening the skin to the face, arms and legs, I have stiffness to the skin, pain throughout the body, resulting in reduced and restricted mobility, muscle weakness and chronic fatigue. "
Skin tightening and tightening around Georgina's face often means she is unable to open her mouth wide enough to eat, while the inflammation, pain and hardening of her lungs and throat make her breathing an immense fight.
His hands and wrists are constantly suffering, making their daily use difficult and physical contact can be unbearable.
"I tend to use my elbows to get up, but the resulting frictions can cause ulcers on my elbows, which makes things harder and more painful," says Georgina.
"Brushing your teeth is difficult. I find it difficult to hold the toothbrush because of the stiffness of my hands. It is difficult to unscrew the lid of the toothpaste and, since I can not open my mouth because of the tightening of the skin and muscles, I have to use a baby toothbrush just to slip it into my mouth. It is very difficult and always painful to have access to the bottom teeth.
"Turning faucets is very difficult and can be extremely painful for the fingers, especially when I have digital ulcer attacks, joint pain and general skin sensitivity.
"The slightest blow is agony – so it's literally doing most things all day long.
"Scleroderma has affected my esophagus, so the muscles in my throat do not function effectively, that is, when I eat, food can get stuck in my throat very easily. I vomit a lot when some foods do not eat properly. "
Her illness has visible symptoms, such as sore, redness of the skin, swelling and stretching of the face and blistered hands that she can not close in the fist, which means she sometimes gets looks and looks negative comments.
Of course, other aspects of his illness are invisible and his disability is often dismissed.
Georgina sometimes has to use a wheelchair or a cane, but not always. Scleroderma also affects her intestines, which means that she needs to use toilets for the disabled and that she needs to be judged by people who do not think she looks bad.
Georgina thinks that scleroderma is not commonly understood and hopes that, if she speaks openly about her story, she will change things for others in trouble.
"When I was diagnosed, I felt very overwhelmed," she says. "I really could not process the information to begin.
"I never thought of hearing about my incurable health condition, which changed my life. I was very in denial and angry to start.
'To look at me, you can barely see that something is wrong. It was something that I had really struggled to accept in the beginning and I still have frustrations because it's like living in limbo with chronic diseases. I do not fit into what we think most often as "disabled".
"It can be difficult to understand how a disease that is not immediately visible can be so debilitating.
"Several times, I had to deal with dirty looks to park in a place for people with disabilities using my blue badge.
"Unless I have my cane or my wheelchair, I seem to enjoy it, but honestly, that's not the case."
After a year of chemotherapy, Georgina had to undergo multiple treatments to reduce the symptoms of diffuse systemic sclerosis.
She is currently taking regular infusions of Iloprost, a medication that relaxes arteries and improves blood pressure. She takes daily suppressive medications, steroids, painkillers and drugs for severe acid reflux.
The 34-year-old is also scheduled to visit the hospital for regular check-ups, CT scans and lung function tests, as well as to manage flareups when they occur.
It is important to note that while treatments may reduce symptoms and Georgina's pain levels may change daily, there is no curative treatment for scleroderma – it is a chronic condition that causes her constant pain.
Georgina tries to stay positive and continue with the treatments that seem to help.
"With my skin tightening, we had to stretch everything again and get it to work properly again," she says. "These sessions were a complete agony, but they were worth it in the long run. My skin seemed to contract and significantly affect my mobility.
"Now, I practice weekly deep tissue massages. Tension and stiffness can change from week to week, but it still helps and with increased blood flow, it really helps to keep my skin as flexible as possible.
"I am extremely lucky to have such a strong support network around me. My family and friends have always been great and never made me aware of anything when I'm with them. They make sure I do not miss anything and think about how to adapt so that I can participate.
"These are the little things that I feel most about – like my hands, they're less mobile and if I'm all alone, I'm panicked every time I have to manage money, for example, it's so simple, but when I'm in a panic, I'm always panicked, I'm having trouble getting coins into my purse and I'll probably give up something and I'll have some wrong to pick it up.
"My grip is terrible because I can not completely close my hand in a fist, so things get out of my hands all the time.Being very slow with packing, I panic that people are watching. even look at someone in the queue because I feel embarrassed.
"I can become very conscious in the supermarket, unable to take cans, bottles because of my grip and clutching my hands. I am unable to wear too much because I do not have the physical strength. Very short trips to the store will exhaust me completely.
"Then there is technology – I can not use the touch screen like everyone else, it's to make life easier … Well, not for people with scleroderma." Curved fingers and because of ulcers, finger joints can be extremely painful.
"I try to overcome my uncertainties and tell myself that this is what's going on in my head, it's the most difficult part that I really feel about myself, especially when eating is involved. I constantly panic about something that may not fall and get stuck or look strange because I can not open my mouth normally. "
"Meeting new people sometimes makes me very anxious, the question:" So, what are you doing? "
"At first, I got so excited about it because my life was no longer" normal ", unable to work because of an invisible illness, but looked quite fine."
Georgina now shares her experiences of scleroderma on Instagram with the goal of raising public awareness of the rarely-mentioned condition and helping those who suffer from it.
"I'm happy to talk about scleroderma to anyone who wants to hear it," she told us. "Awareness is essential to improve understanding.
"You can never judge a book on its cover, and living with this disease has definitely made me more compassionate and empathic to others.
"I hope that being more open and honest can help spread that compassion and understanding.
"I would be lying if I said that it was not a mentally difficult journey – I really had ups and downs and times when I was so low, I felt so physically exhausted and mentally that I just wanted to give up.
"I decided that this disease would not beat me. I am determined to stay as strong and positive as possible. "