Raynauds Scleroderma Global Patients: My Skin Is Cured From Scleroderma - Nicola Whitehill. Scleroderma, Raynaud's, Autoimmune Rare Disease

My Skin Is Cured From Scleroderma - Nicola Whitehill Scleroderma, Raynaud's, Autoimmune Rare Disease
'My Skin Is Cured From Scleroderma' 30.11.16

Almost 18 years to the day, from having first attended the Scleroderma Unit at The Royal Free Hospital in London, I am exhilarated to have been told on 30^th November 2016, by the world scleroderma expert, Prof Chris Denton, that ‘your skin is now cured from scleroderma’.

Having been given a 15 month prognosis by my medical diagnosing doctor in autumn 1997, aged 24, in December 1998, I arrived at Dame Prof Black and Prof Denton’s office at the Royal Free hospital in a very bad way.

My body had turned to stone, literally.

The skin covering my entire body had become tight, itchy and painful. In an attempt to put this into words, it would be similar to a clothing garment shrinking in the washing machine.

This was accompanied by swollen joints and weak muscles, making any physical exertion, including standing, a huge feat.

My fingers and toes were constantly blue with a minimum of 4 digital ulcers at any one time.

Along with a level of tiredness that I had never experienced before (even after a week holidaying in Ibiza post A-levels, did not make the slightest level of comparison).

Following extensive and numerous medical tests, the good news was that minimal internal organ involvement was evident.

However, the progression and aggressiveness of the fibrosis and lack of elasticity of my skin and connective tissue placed me in the ‘diffuse systemic sclerosis critical patient’ list.

An urgent medical treatment plan was drawn up with numerous iv cyclophosphamide infusions scheduled, which if ineffective, I would have a stem cell transplant.

The feeling of leaving the hospital that day, is one that I can not articulate other than an overwhelming inner-sinking feeling, having to consciously force myself to breathe.

This feeling was comforted by the knowledge that, I was now under the medical expertise of global leaders in their field, whose dedication and commitment to improving the scleroderma patient landscape, invoked huge hope in me, that a cure would be discovered within my lifetime.

And most of all, they would ‘pull out all of the stops’ to do everything they could to help me, and of extreme importance to me, help me to realise my childhood dream to be a barrister.

My new medical team took no time in getting me hooked up to the chemo drips, I had two sessions before the Christmas holiday, which was repeated at the start of 1999.

At the same time I was taking mycophenolate mofetil (mmf) 2g / day.

By easter, my skin symptoms gradually eased, taking me out of the stem cell transplant list.

On 1^st March 2004 I qualified as a self employed practising barrister, andso, having achieved my personal life goal, I reduced the mmf dose with view to stopping it completely.

By the end of June, I was back on my sofa, experiencing a relapse with my symptoms, mainly lethargy, intense musculo-skeletal pain (tin man) and neuralgic pain.

Six months later, I relocated to my birth town of Southport, with the management of my symptoms to a tolerable level, now taking over as my full time job.

Digital ulcers used to be my nemesis until taking Bosentan 125mg twice a day, continuous since October 2012.

Due to my Raynaud’s sensitivity, I have found that the prevention of attacks is far less painful, than having an episode.

This makes for a ‘home bird’ all year round.

Again, words are difficult when trying to describe a Raynaud’s attack.

‘Slamming your hand in the car door’, I would suggest, is an acceptable description, however, the pain can not be articulated.

If I am honest, 18 years ago, I would never have believed, (given the medical advice which I had been given, combined with how I was feeling, and what was happening to my body at that time), that I would still be alive, let alone, be told that my skin would be cured from scleroderma.

I do not want to appear to be morbid, just honest, about my reality at that time.

Again, I struggle to allocate accurate words, when trying to describe the level of gratitude and appreciation I have for Prof Denton and the Scleroderma Unit team at the Royal Free Hospital.

I am also extremely grateful to my local medical team here in Southport, Dr Sykes and the rheumatology team, as well as, Dr Bontea and the dermatology team at Ormskirk hospital, and of course my dentist, Andrew Booth and hygienist Louise.

As a long term scleroderma patient, my main health challenges now include, extensive calcinosis, telangiectasia, dry mouth / gum recession, chronic MSK pain and Raynaud’s.

I have stabalised my gastro-intestinal symptoms by altering my diet and including daily smoothies and fresh juices for maximum super food nutrition.

However, this combination of my current unmet clinical needs, most certainly shows that scleroderma is more than skin deep, causing devastation to the vascular and soft tissue / connective tissue processes along the way.

I have written about the Scleroderma Olympian and overall diagnosis

All in all, I am more than aware, and I am extremely humbled to know that I am a very lucky scleroderma patient, in relation to the ‘mild’ set of symptoms which I experience, compared to some of my fellow patients, who are far braver than I.

Click here, to view my article 'Living the dream, being your own Scleroderma, Raynaud's, Autoimmune Rare Disease Advocate'.

One day, hopefully, very soon, I want to be able to say ‘I used to have scleroderma’.

So, until that day, I will continue to relish in the delight of how I feel, knowing that ‘my skin is cured from scleroderma’.

An edited version of this article was published here, in my Column with Scleroderma News.

December 2016.

To read my articles:

Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here

March Autoimmune Disease Awareness Month 2018, Click here

Global patient video, Click here

Becoming a Patient Research Ambassador for the NIHR, Click here

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here

Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here

Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here

The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here

Key Event Dates 2018, Click here

Importance of an early diagnosis, Click here

Taking Part in Clinical Research Trials, Click here

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here

Expert Specialist Centres, Click here

My Skin is Cured from Scleroderma, Click here

UK Guidelines for Managing and Treating Scleroderma, Click here

Fatigue, Click here

Mobility, Click here

Diet and nutrition, Click here

Raynaud's, Click here

World Scleroderma Day 29^th June 2016, Click here

World Scleroderma Day 29^th June 2017, Click here

Why Global Collaboration is important to the Rare Disease Patient, Click here

RARE DISEASE DAY:

The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here

2016 Rare Disease Day Patient Voice

2016 Rare Disease UK Parliamentary Reception

2017 Rare Disease Day Flashback

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

Rare Disease Day is a fantastic opportunity for the entire rare disease community to shine a spotlight on their reality, combining as one unified voice. Where, at least one commonality presides –

Medical Research provides the brightest light

for the illumination of the rare disease patients’ plight.

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017.

VIDEO

INDEX

Although rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide, (the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same:

Early Diagnosis

Expert Specialist Centres

Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here

Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here

Preamble - here

The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19^th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre.

Sept 2017

I am eternally grateful to the global scleroderma trail blazers Dame Prof Black and Prof Chris Denton, whose commitment and dedication to unlocking the scleroderma enigma, is nothing other than, superhuman.

I am truly humbled and inspired by their work ethic. I am wholly appreciative for Prof Denton’s continued medical expertise and support, especially during my barrister qualifying years, 1997 - 2004.

1^st March 2004, I qualified as a self employed practising barrister. Further to having been told in 1997, by my diagnosing doctor, that I was looking at a 15month prognosis.

I very much hope to utilise my professional skills and qualifications along with my patient experience, to help achieve the #SclerodermaFreeWorld dream, hoping to improve understanding and best practice, in the meantime.

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