Raynauds Scleroderma Global Patients: 2018

Christmas Holiday Wishes and a New Year to Celebrate 2019.
Scleroderma, Raynaud's, Autoimmune Rare Disease.

www.justgiving.com/fundraising/sclerodermaunit-royalfree

#RaynaudsFreeWorld #SclerodermaFreeWorld

blog.raynaudsscleroderma.co.uk

The seasonal festive holiday time is almost here.

My little dream team are getting in the festive spirit by wearing their Christmas jumpers.

As patients living with a chronic debilitating, autoimmune rare disease, we know all too well that, there is no holiday from our day to day reality.

Managing the numerous and complex symptoms makes for a full time job.

Sept 2017

Recently, I celebrated my 20th year since first having dragged my 'tin man' body, to the Scleroderma Unit at The Royal Free Hospital in London, UK.

I am hugely grateful to Dame Prof Carol Black, Prof Chris Denton and the NHS, for keeping me alive.

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.

My wish at that time was to achieve my personal career goal of becoming a barrister, a 'Learned Friend'.

Graduation photo July 2001

This photo was taken when I was 'called to the Bar' at Gray's Inn in July 2001.

This was further to my postgraduate diploma in law and a year spent at 'Bar School'.

I then had to shadow several barristers to complete my 'hands on' training. I am eternally grateful to the late Ross Fitzpatrick (Mungo) and David Herbert QC for their learned Counsel and friendship during this time.

1st March 2004, further to 7 years of treatments (chemotherapy and immunosuppressants), whilst studying and training, my wish was granted. Prof Denton was extremely supportive throughout this time, helping me achieve my then wish.

I am now 14 years chemotherapy / immunosuppressant free.

I take Bosentan for my Raynaud’s and I control my GI symptoms with a strict Diet.

Over here in the northern hemisphere, the season of winter has arrived.

Winter really is my nemesis time of year. 'House arrest' is my only option, in an attempt to minimise my Raynaud's flares. Prevention is better than cure. Infact, prevention is crucial, since there is no cure. Video.

However, I know that for my fellow patients, Margie, living in the southern hemisphere, this is their favorite time of year! Sadly, RIP my lovely friend Silvana.

By the time winter sets in, I am constantly cold.

This is accompanied with continual, relentless exhaustion, lethargy, and pain, causing immense frustration.

However to look at me, people kindly tell me, "you look so well".

I wish that my body could feel warm all year round.

Unfortunately, I must wear Ugg boots and gloves on the most hottest of days, in an attempt to prevent a Raynaud's flare.

Hottest day of 2013

This year, 2018, has been particularly challenging for me due to extra complications such as skin cancer, dental issues, calcinosis, and an index finger ulcer.

I am still fragile from having started the year with shingles.

These unmet clinical needs were replicated during my global patient profile campaigns for Scleroderma Awareness Month 2017 and 2018.

Telangiectasia, Sclerodactyl hands and Gastro Intestinal issues were also common symptoms, amongst patients.

Telangiectasia 18.9.18

For optimal patient care, the following are essential:

All I want for Christmas is for my Christmas / daily wish: a 'SclerodermaFreeWorld' and a 'RaynaudsFreeWorld', to be granted...

Medical Research provides immense hope for this wish to be granted.

Now that I am blessed to be a long term scleroderma survivor / scleroderma Olympian, I spend most of my spare time when not attending my symptoms, committed to the 'SclerodermaFreeWorld' and 'RaynaudsFreeWorld' wish.

This year, I am honored to have become a patient research ambassador with the National Institute for Health Research. video. 'Hall of Fame' article.

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

This is in addition to my NHS England CRG Specialised Rheumatology role, and my patient expert roles with the European Medicines Agency.

Since this is my last article for my column this year, I very much want to wish you a fairy happy Christmas holiday time, and a most prosperous 2019, feeling good.

Thank You for sharing the same daily wish in 2019:

'SclerodermaFreeWorld'

'RaynaudsFreeWorld'.

2019 is already looking to be a very busy year with exciting times ahead, for this wish to be granted.

Living the dream, scleroderma style.

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.

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

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