A young woman diagnosed with a rare disease that left her with clawed hands and extreme pain was given just 10 to 15 years to live at age 27.
Claudia Sultan, author and project consultant, was sitting at her desk a decade ago and noticed her fingers turning blue and ‘icy’.
Claudia, 37, from Wollongong, New South Wales, assumed she was just feeling the effects of winter, but now she knows it was the first sign of a far more sinister diagnosis.
Claudia suffered from scleroderma, a rare autoimmune disease that floods the body with too much collagen, leading to hardened skin, tight connective tissues, and constant pain.
“I had just come out briefly, I retreated inside and noticed my fingers throbbing in pain and changed from blue to red to white,” Claudia told FEMAIL.
Claudia Sultan was diagnosed with scleroderma in 2013, an autoimmune and rheumatic disease in which the body produces too much collagen.
The unusual symptom persisted for two weeks before she visited the doctor who misdiagnosed her with Raynaud’s disease, a condition that makes parts of the body feel numb and cold.
Over the next few weeks, Claudia found that she couldn’t move her elbows, had difficulty raising her arms above her head, and couldn’t even make herself a cup of tea. She also fell down the stairs getting off a train because her knees ‘locked’.
The series of events led Claudia to her eventual diagnosis of scleroderma which it can stiffen the tissue around vital organs, such as the lungs, heart, and kidneys.
Before the diagnosis, she noticed her fingers turning an icy blue and throbbing in pain. The following weeks she could not move her elbows.
Claudia was told that the life expectancy for patients suffering from the disease is 10 to 15 years from diagnosis if the condition begins to harden essential organs, turning their world upside down.
Claudia has been left with claw-shaped fingers (in the photo)
“My mother went with me to the doctor that day and I was in complete shock,” she said.
‘Being told how long I possibly have to live was very damaging and completely broke me. I had never heard of scleroderma before and immediately googled it.”
As her body produced an influx of collagen, Claudia’s face felt increasingly tight and firm, leaving no wrinkles.
“I wish I had wrinkles instead of scleroderma,” he said.
‘I felt trapped in my body and disconnected from myself. It’s like I woke up one day and I was a completely different person.
The cause of the disease is unknown and there is no cure despite 6,000 Australians being diagnosed with it each year.
What is scleroderma?
Systemic sclerosis (SS), also known as scleroderma, is an autoimmune disorder that causes abnormal growth of connective tissues.
It is the result of an overproduction and accumulation of collagen in the tissues of the body. Collagen is a fibrous type of protein that makes up the connective tissues in your body, including your skin.
Connective tissue gives your tissues (organs and muscles) strength and shape. With SS, your tissue becomes thick and stiff, leading to swelling and pain.
It also causes changes in the texture and appearance of the skin due to increased collagen production. Collagen is a component of connective tissue and hardens with this disease.
It can affect the blood vessels, muscles, heart, digestive system, lungs, and kidneys.
The symptoms and severity of the disorder vary from person to person depending on the systems and organs involved.
Doctors don’t know exactly what causes this process to begin, but the body’s immune system appears to play a role. Scleroderma is most likely caused by a combination of factors, including immune system problems, genetics, and environmental triggers.
It occurs much more often in women than in men.
Fountain: health line
Claudia was prescribed medication to try to reduce symptoms and control the disease, but “nothing worked” and she was told she had to “live with it.”
“My skin started to get very hard and thick and it physically changed my hands: my fingers are now curved like claws,” Claudia said.
But she did not lose hope.
A colleague recommended a specialist at St. Vincent’s Hospital in Sydney, who claimed he could “reverse the condition 50 per cent” through a stem cell transplant.
He decided to go ahead with the treatment, a process that involves collecting, treating, and inserting his own stem cells back into the body, all while removing the damaged cells.
“I went through a period of self-hatred and couldn’t accept that fate. I always wondered “why me?” I didn’t want to believe it,’ she said.
Although the stem cell transplant was painful, it was 50 percent successful. This meant that his symptoms were cut in half.
Both before and after the transplant, she received six sessions of chemotherapy that had various side effects, including hair loss, insomnia, infertility, nausea, and weight loss.
“It took me about a year to get back on my feet,” Claudia said.
Unfortunately, in 2018, Claudia relapsed and the disease targeted her lungs. As a result, she now has a persistent and chronic cough.
‘I felt trapped in my body and disconnected from myself. It’s like I woke up one day and I was a completely different person,” Claudia said.
Claudia said she needs to adjust to her ‘new way of life’ by learning to accept herself and her challenges.
‘I had to face my insecurities and stop doubting and comparing myself to others. I had to discard negative thoughts and find happiness in the smallest things. There was a lot of trial and error,” she said.
Now it is a matter of managing the condition in the best possible way.
Claudia shared her experience in her memoir ‘A Life With Uncertainty’.
you can buy the book hismy.