Leaving a lasting legacy: Nicola’s story

Nicola Whitehill was diagnosed with diffuse systemic sclerosis (scleroderma) and Raynaud’s in 1997. Nicola campaigns tirelessly to raise awareness of scleroderma, a rare autoimmune condition that affects the skin and connective tissue. In this blog written to mark World Scleroderma Day, Nicola explains why she’s chosen to leave a legacy to the Royal Free Charity to support ongoing research into the condition.

From small acts of kindness today to huge leaps in curing disease tomorrow

I will soon be celebrating my 23rd year anniversary as a patient at the scleroderma unit of the Royal Free London NHS Foundation Trust. On reflection, this feels like a remarkable personal milestone to celebrate and share on World Scleroderma Day.

For over 20 years, I have lived with the daily uncertainty as to when the symptoms of my disease will advance to the point of making medical intervention futile. At the time of my diagnosis in 1997, I would never have believed that this anniversary was possible, due to my aggressive symptoms at that time.  Ever since I heard those life-changing words “You have scleroderma” and was given a 15-month prognosis, I have thought about my mortality daily.

In December 1998, I was lucky enough to start treatment at the national centre of excellence for scleroderma and connective tissues diseases at the Royal Free Hospital. Over the last two decades, the support I have received from this world-renowned centre has been simply exceptional.

In November 2016, world scleroderma expert Professor Chris Denton told me that my skin was cured from scleroderma. I am sure that this, and my longevity, have been due to my early diagnosis and treatment plan. However, it remains a full-time job to manage my chronic and degenerative systemic symptoms caused by this rare autoimmune disease. My experience shows how important an early diagnosis is in preventing potential life-threatening damage and that a well-resourced and funded expert centre is paramount to best patient care.

I have seen first-hand how the scleroderma unit at the Royal Free Hospital has developed and grown, and I am immensely grateful to the team there for keeping me alive – decades beyond my initial prognosis and way beyond what I could ever have expected was possible.

However, investment in medical research is still desperately and urgently needed to eliminate this very cruel, debilitating, and life-shortening disease. There is currently no known cure for scleroderma, with little knowledge of its cause. It is crucial that resources and funding are found so that medical databases are compiled to provide invaluable research data and insights.

To know that there is a medical something which could help to improve my symptoms and which, further to more clinical research, may become available to me in the future, fills me with hope that my personal daily reality may be improved one day.

I am certain that newly-diagnosed patients will benefit from future research developments into scleroderma and other medical conditions at the Royal Free Hospital. The launch of the Pears Building and the expansion of the Institute of Immunity and Transplantation – which includes the scleroderma clinical service – is a particularly exciting development.

As a passionate supporter and patient, I considered how I can best support the scleroderma unit and help it when I am no longer here. I decided to write my will and include the Royal Free Charity in supporting the work of the unit. I made my will using the Royal Free Charity’s free will writing scheme, which could not have been easier. I was extremely impressed with the professionalism of the service.

I know that my gift will make a real difference in supporting world-class and much-needed medical research. I feel a huge sense of relief and peace of mind from knowing that my wishes will be honoured. And, maybe one day, a #SclerodermaFreeWorld.

Visit Nicola’s blog for more blog.raynaudsscleroderma.co.uk

More information

If you would like information on how a gift in your will could help improve the experience of patients at the Barnet, Chase Farm and Royal Free hospitals, contact the Royal Free Charity legacies team at [email protected] or on 020 7317 7772. Alternatively, please visit the legacy pages here.