Raynauds Scleroderma Global Patients: Celebrating 20 years at the Scleroderma Unit, The Royal Free Hospital, UK. Nicola Whitehill. Scleroderma, Raynaud's, Autoimmune Rare Disease.

Celebrating 20 years at the Scleroderma Unit,

The Royal Free Hospital, UK. Nicola Whitehill.

Scleroderma, Raynaud's, Autoimmune Rare Disease.

www.justgiving.com/fundraising/sclerodermaunit-royalfree

#RaynaudsFreeWorld #SclerodermaFreeWorld

blog.raynaudsscleroderma.co.uk

Sept 2017

This week, I am celebrating my 20^th year since first having dragged my ‘tin man body’ to the world leading expert center, the Scleroderma Unit at The Royal Free Hospital in London, UK.

The previous year, at the time of my initial diagnosis in September 1997, I was told that I had a 15month prognosis, due to the aggressive attack, which the diffuse form of the disease, was having on my body.

I was also told that there was no cure, with treatments targeting symptom suppression in a ‘hope for the best’ kind of way. The treatments used being steroids, chemotherapy and immunosuppressants.

During the year following having first heard those life changing words ‘You have scleroderma’, I took all of the standard treatments used, in an attempt to suppress the disease activity.

By December 1998, I was in a very bad way. My body was stiff, weak, in constant excruciating pain, and my skin was extremely tight.

I was then started on a new medication regime which included 3 iv Cyclophosphamide infusions, along with mycophenolate mofetil (MMF) tablets.

Thankfully, my name was removed from the Stem Cell transplant waiting list.

A daily dose of 2g MMF for 5 years stabalised my symptoms. This was stopped in March 2004, upon my achieving my personal career goal of being a practising barrister.

I am now 14 years chemotherapy / immunosuppressant free. I take Bosentan for my Raynaud’s and control my GI symptoms with a strict Diet.

In November 2016, I was delighted to hear Prof Chris Denton advise me that my skin is cured from scleroderma.

Prof Denton and I, Sept 2017

I am eternally grateful to Prof Chris Denton, my other dream team members and ultimately, the NHS for keeping me alive.

Raynaud's world trailblazer, Dr Kevin Howell and I, Sept 2017

Dr Hannah Sykes, Consultant Rheumatologist Southport Hospital, and I, Aug 2017

I know that I am a ‘lucky’ scleroderma patient.

Lucky, in that, I have minimal internal organ damage. Lucky, in that, I continue to survive.

Albeit, my full time job is looking after, and respecting my symptoms. I am super mindful to avoid any situations which will exacerbate a flare in my symptoms.

Prevention is better than cure, as, there is no cure, yet.

Hottest day of 2013 - I need to wear Ugg boots and gloves.

Over the years, I have been privileged to have become an advocate on the global stage for raising awareness of scleroderma, Raynaud's and rare diseases as a whole.

Several highlights include:

BBC radio interview 2013. I include my coping details for living with such a life changing diagnosis.

Global feature, The Daily Mail, 2013.

Presentation the British Society for Rheumatology annual conference 2015.

Presenting at the European Parliament, 2015.

Rare Disease UK parliamentary reception 2016.

My Column with Scleroderma News.

I am honored to have become a patient research ambassador with the National Institute for Health Research, earlier this year. video.

Medical Research
provides immense hope for
#SclerodermaFreeWorld and #RaynaudsFreeWorld

Recently, I was appointed a Patient Public Voice on the NHS England CRG for Specialised Dermatology.

I am delighted about this new role. This is in addition to my NHS England CRG Specialised Rheumatology role, and my patient expert roles with the European Medicines Agency.

However, my 'tin man' body, along with chronic fatigue and mobility challenges, remain constant sources of frustration.

This year in particular, has been quite challenging for me with my scleroderma 'added extra' complications such as skin cancer, dental issues, calcinosis and index finger ulcer.

During my global patient profile campaigns for Scleroderma Awareness Month in 2017 and 2018, every patient said that Raynaud’s and digital ulcers were continual problems for them.

Other unmet clinical needs that patients have in common include:

Overall, for optimal patient care, the following are essential:

I'm living the dream, scleroderma style, with eternal gratitude to the world trailblazer superhuman Prof Chris Denton, my medical dream team and my non medical dream team.

'Attitude is everything, so pick a good one, to help you through this abyss'.

Follow:

Facebook: Raynauds Scleroderma Awareness — Global Patients

Twitter: @SclerodermaRF and @RaynaudsRf

Use the hashtags #SclerodermaFreeWorld and #RaynaudsFreeWorld.

Please donate to help fund medical research at the Scleroderma Unit of the Royal Free Hospital, London.

One-hundred percent of raised funds will be used for medical research purposes only. Thank you.

Please consider leaving a Gift in your Will, for medical research at the Scleroderma Unit.

Thank You.

Living the dream, scleroderma style.

An edited version of this article was published here, in my Column with Scleroderma News. December 2018.

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.

INVESTMENT in MEDICAL RESEARCH is CRUCIAL.

To read my articles:

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

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- 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