I’ve defied the odds – now I can help others
AT THE age of 24, Nicola Whitehill was given 15 months to live after being diagnosed with Scleroderma, a rare chronic illness affecting every part of the body.
Now approaching her 44th birthday, Nicola has defied her initial medical prognosis, living with the condition for over 19 years.
Nicola told the Visiter: “I’m rewriting the medical textbook with how well I’m doing. I was told I had 15 months to live when I was 24.
“I do feel very blessed that I’ve denied my initial medical prognosis.”
She hopes to raise awareness of the rare disease during June, which is Sclerodoma Awareness Month.
Nicola added: “Living with a chronic illness is devastating in itself, but living with a rare chronic illness makes it an even bleaker landscape.
“Raising awareness is important for educational purposes and to highlight the devastating consequences of this rare disease, where more money for research is desperately needed to uncover the cure.”
Nicola worked as a barrister until her condition forced her to give up her 60-hour-a-week dream job and move back to Southport to try to cope with her symptoms.
Scleroderma is an autoimmune disease that causes the skin to harden and thicken. Symptoms can result in the skin becoming thick and puffy, making it difficult to move.
Nicola suffers with systemic scleroderma which can also affect the internal organs.
Nicola said: “I feel like the tin man constantly because I’m so stiff.
“It feels like your body has been dipped in concrete and wrapped in barbed wire. That’s literally how I feel every day.”
She has had to completely change her lifestyle to manage her symptoms, as treating her condition has become a full-time job. She starts every day by bathing her skin in liquid paraffin and then moisturising with a thick emollient.
“I’ve had 19 years of living with this. It’s caused such devastation and totally turned my life upside down.
“It was as if someone pulled the rug from under my feet”, Nicola said.
Since giving up her career as a barrister, Nicola has transferred her professional skills to advocating for rare dis- ease awareness. She is a patient advocate on the NHS England Clinical Reference Group for Specialised Rheumatology and a patient expert with the European Medicines Agency.
During Scleroderma Awareness Month, Nicola hopes to highlight the importance of expert centres for diagnosis and treatment, as early diagnosis can prevent lifethreatening damage.
Nicola was first diagnosed with the illness in 1997 after her fingers became stiff and swollen with tight, shiny skin.
She also experienced joint and muscle pain, tiredness and difficulty opening her mouth.
Specialised blood tests confirmed that she had scleroderma.
As well as helping with early diagnosis and treatment, Nicola hopes that raising awareness will mean that a cure can be found for her chronic illness.
For more details, visit: eurordis.org/news/livingwith- scleroderma- andraynauds-disease