Raynauds Scleroderma Global Patients: Raynaud's Awareness Month, October 2018. Scleroderma, Raynaud's, Autoimmune Rare Disease.

Raynaud's Awareness Month, October 2018.

Scleroderma, Raynaud's, Autoimmune Rare Disease.

www.justgiving.com/fundraising/raynaudsunit-royalfree

#RaynaudsFreeWorld #SclerodermaFreeWorld

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October is Raynaud's Awareness Month.

October is also the month when the beautiful autumnal shades over here in the UK, serve as a reminder that, my daily reality of ‘full time hibernation’, is looming.

My 50 shades of blue 'party trick', whereby my hands and feet change colour at the slightest temperature decrease, is extremely difficult to control during this time of year.

I have detailed my Raynaud’s reality, highlighting the immense impact that this diagnosis has on my life, combining with the full time job of respecting my scleroderma symptoms.
Jan 2017 video:

My tin man body, along with fatigue and mobility challenges, remain constant sources of frustration and make for a full time job with managing my symptoms.

'Ah great another day to spend in bed' is not my favourite mantra.

However to look at me, people kindly tell me ‘But, you look so well’

But, my reality is that my Raynaud’s symptoms keep me under 'house arrest' all year round.

My Raynaud’s sensitivity is so severe that an attack can be induced by me just moving from one room to another, indoors!

Therefore, my symptoms are easier to manage by avoiding any temperature change.

My inner ‘Bond Girl’ absconded years ago, with me being forced to wear Ugg boots and gloves even in the summer.

Hottest day of 2013

There is currently no cure for Raynaud’s, with prescription medicines having blood pressure altering, unpleasant, side effects.

I no longer experience as many digital ulcers and the intense, excruciating pain which comes with them, since taking Bosentan 125mg twice a day.

The world trail blazer Dr Kevin Howell at the Royal Free Hospital has kindly shared this video which shows the science happening during a Raynaud's episode.

Thermography equipment

The Thermograph Imagery machinery costs in excess of £5,000.

Nailfold Capillaroscopy is the diagnostic test used to identify possible blood vessel damage, which can indicate a possible underlying autoimmune condition.

The Nailfold Capillaroscopy equipment costs around £1,500.

Kevin Howell

PhDASIS FRPS MIPEM CSci

Clinical Scientist and Honorary Research Associate

UCL Institute of Immunity and Transplantation

Royal Free Campus

Rowland Hill Street

London. NW3 2PF. UK.

Without a shadow of doubt, the entire global Raynaud’s community are eternally grateful to Dr Howell for his dedication and commitment to the Raynaud’s enigma over the course of his career within the NHS, which he is currently celebrating his 26^th year.

Many congratulations and Thank You Dr Howell, the global Raynaud’s trailblazer.

Dr Howell and I, Sept 2017

Infact, October is a very busy month for our community, providing lots of awareness platform opportunities.

October 14- 20th is Invisible Disabilities week.

World Arthritis Day is October 12th.

Ironically, October 12th is also the anniversary of the passing of the late scleroderma and Raynaud's trailblazer, Anne Mawdsley.

To whom, I am eternally grateful for her friendship, as well as, for all that Anne did to help our community gain a voice over the last few decades.

This was highlighted and recognised within the P152 Poster ‘Optimizing Scleroderma Centers of Excellence: Perspectives from Patients and Systemic Sclerosis (SSc) Experts’ presented at the 4^th Systemic Sclerosis World Congress held in Lisbon 2016.

With an acknowledgement 'dedicated to the memory of Anne, founder of the Raynaud’s and Scleroderma Association UK, who raised over 10 million pounds for SSc research, education and advocacy in her lifetime.'

P152 Poster is included within Volume 1 Number 1 of the Journal of Scleroderma and Related Disorders.

During the course of my global patient profiles campaign for Scleroderma Awareness Month 2017 and 2018, every patient detailed how Raynaud’s and digital ulcers were a continual problem to them. INDEX

Other unmet clinical needs, which patients have in common include:

CALCINOSIS,

GUM RECESSION,

SOFT TISSUE, ULCERS,

TELANGIECTASIA,

SCLERODACTYL HANDS,

RAYNAUD'S,

GASTROINTESTINAL

I am honored to be a patient research ambassador with the National Institute for Health Research. video.

Overall, for optimum patient care, 3 hallmarks preside:

Early diagnosis

Expert specialist centers

Access to innovative medicines

medical ‘dream team’

(expert specialist as the clinical lead).

In the meantime, I continue to remind myself that 'My Job Today is to Simply Get Better', with hope, and my canine diva dream team, as my constant companions.

Follow:

Facebook Page: Raynauds Scleroderma Awareness Global Patients

Twitter, Instagram, Blogger, YouTube: @SclerodermaRF @RaynaudsRf

#SclerodermaFreeWorld #RaynaudsFreeWorld

Please DONATE to help fund medical research at The Raynaud's Unit, The Royal Free Hospital, London.

Please DONATE to help fund medical research at The Scleroderma Unit, The Royal Free Hospital, London.

100% of your monies will be used for medical research purposes only. Thank You.
October 2018.

#SclerodermaFreeWorld #RaynaudsFreeWorld

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

Raynaud’s Unit, Royal Free Hospital, UK. Facebook Page

If you would like to add the Raynaud's twibbon to your Facebook Profile Picture - please Click here

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:

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