Raynauds Scleroderma Global Patients: December 2016

My Skin Is Cured From Scleroderma - Nicola Whitehill Scleroderma, Raynaud's, Autoimmune Rare Disease. www.justgiving.com/fundraising/sclerodermaunit-royalfree #RaynaudsFreeWorld #SclerodermaFreeWorld blog.raynaudsscleroderma.co.uk
'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.

Scleroderma Family Day 2020

25^th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton

PROVISIONAL PROGRAMME

09.30 – 10.00 Registration and Coffee

10.00 – 10.20 Welcome Dame Carol Black

Prof Chris Denton & David Abraham

10.20 – 10.40 What is a Biopsy? Dr Kristina Clark

10.40 – 11.05 Dental aspects of Scleroderma Prof Stephen Porter

11.05 – 11.25 Gastrointestinal problems – Dr Fiza Ahmed

shedding new light on old problems

11.25 – 11.50 Pulmonary hypertension and the heart Dr Gerry Coghlan

11.50 – 12.15 Scleroderma cohort studies – Dr Francesco

‘Learning from our patients’ del Galdo

12.15 – 14.15 LUNCH BREAK – see below

14.15 – 14.45 25 years of progress – Prof Chris Denton

from ‘black box’ to ‘positive trials’

14.45 – 15.15 International speaker – Dr Madelon Vonk

Scleroderma Management in Netherlands

15.30 Raffle

Lunchtime Discussions Groups / Demonstrations include:

Clinical Trials Rachel Ochiel and team

National Institute of Health Research Christine Menzies

Drug Information / monitoring Pharmacy

Massage Keith Hunt MBE

Pulmonary Hypertension Education / nursing Sally Reddecliffe/Adele Dawson

Rheumatology Laboratory Research Laboratory Staff

Scleroderma Education / Nursing Louise Parker/ Joseph Cainap

Thermography Dr Kevin Howell

SRUK Ollie Scott

Sjogren’s syndrome British Sjogren’s Society

To Read My Articles:

Gift in My Will, Click here

Planning for the Future, Click here

Rare Disease Day:

Rare Disease Day 2020:

Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here

Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here

Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here

Rare Disease Day 2019: Leaving a Legacy Gift, Click here

Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here

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

2017 Rare Disease Day Medical Research

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

2016 Rare Disease Day Patient Voice

2016 Rare Disease UK Parliamentary Reception

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.

To read about medical research at the scleroderma unit, Click here

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 overall.

For optimum patient care, 3 hallmarks preside:

Early diagnosis

Expert specialist centers

Access to innovative medicines

supported by a medical ‘dream team’

(expert specialist as the clinical lead).

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.

To read my articles:

Celebrating 20 years of being a patient at the Scleroderma Unit, Click here

2019 New Challenges, Click here

NIHR Video: 'My Experience of Clinical Trials', Click here

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

The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here

2018 Scleroderma Awareness Raising and Medical Research, Click here

SCLERODERMA:

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

UK Guidelines for Managing and Treating Scleroderma, Click here

Fatigue, Click here

Mobility, Click here

Diet and nutrition, Click here

Raynaud's- How to Diagnose, Click here

'All you need to know', 2016 Awareness Video, Click here

Global Patient Profiles 2018 Video, Click here

Unmet Medical Needs, Click here

Calcinosis Video, Click here

The scleroderma tooth fairy, Click here

Skin Cancer and scleroderma, Click here

Sept 2017

Prof Chris Denton and I, Sept 2017

June 2019

This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.

Read more, here.

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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.

I am truly humbled and inspired by their work ethic and commitment to their patients.

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 original diagnosing doctor, that I was looking at a 15month prognosis.

Chat Magazine May 2019

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. Read more, here

World Scleroderma Day 2018, Click here

World Scleroderma Day 2017, 29th June, Click here

World Scleroderma Day 2016, 29th June. Origins of the date, Click here

World Scleroderma Day 2015, 29th June.

James Carver, myself, Prof Chris Denton

I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.

I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.

To view the presentation, Click here

Raynaud's:

October:

Raynaud's, Click here

To view the UK treatment guidelines for Raynaud’s Phenomenon, Click here

To view the EULAR treatment guidelines, Click here

To view Thermograph Video, Click here

To view Thermograph image, Click here

My Raynaud’s reality, Click here

The global Raynaud's trailblazer - Dr Howell and I, Sept 2017

To view Nailfold Capillaroscopy equipment (used to identify possible blood vessel damage), Click here

Invisible Disability Awareness Video, Click here

To read My ‘Invisible Disability’ experience, Click here

50 Shades of Blue, Click here