RaynaudsRF: Living the dream- Raynaud's Style, Nicola Whitehill. Raynaud's Awareness Month, October 2017. Scleroderma, Raynaud's, Autoimmune Rare Disease.

Living the dream- Raynaud's Style, Nicola Whitehill.

Raynaud's Awareness Month, October 2017.

Scleroderma, Raynaud's, Autoimmune Rare Disease.

www.justgiving.com/fundraising/sclerodermaunit-royalfree

www.justgiving.com/fundraising/raynaudsunit-royalfree

#SclerodermaFreeWorld #RaynaudsFreeWorld

blog.raynaudsscleroderma.co.uk

Living the dream- Raynaud's Style, Nicola Whitehill.

Raynaud's Awareness Month, October 2017.

Scleroderma, Autoimmune Rare Disease.

Sunday, 1^st October, saw the start of #RaynaudsAwarenessMonth 2017.

As scleroderma patients, we know all too well, how debilitating and painful the symptoms of Raynaud’s can be.

Along with, the symptom control of the ‘added extras’ which a lack of blood supply can cause to the scleroderma patient - digital ulcers, calcinosis, to name but a few.

Every patient who kindly took part in my global patient profile Campaign 2017, for Scleroderma Awareness Month 2017, reported Raynaud’s to be problematic and difficult to manage for them.

INDEX

Some fast facts about Raynaud’s:

Nearly every scleroderma patient will present with Raynaud’s symptoms, with some patients reporting their Raynaud’s symptoms as their initial symptom to their scleroderma diagnosis.

Raynaud’s is the narrowing and constriction of the blood vessels to the extremities, hands and feet, as well as, other body parts.

Raynaud’s can present on its own, where it is known as 'Primary', as can be seen with Jane, and Libby, or it can be ‘Secondary’ to another diagnosis, for example, scleroderma.

Raynaud’s is ‘secondary’ in other autoimmune patients, for example, Lupus, Sjogrens. Debbie.

As well as, patients who have worked in an industrial environment, for example, vibration white finger, and a patient whose body has been subjected to intense hypothermic conditions, for example, military operational personnel.

Back to my Raynaud’s reality

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

My symptoms are easier to manage by avoiding any temperature change.

Should I have to go out, I must wear the appropriate clothing.

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

Hottest day of 2013, I have to wear Ugg boots and gloves.

sunny autumn day 2016

On the 27^th September I had the pleasure of attending my monitoring check up appointment with my hero, world expert, Prof Chris Denton, at the Scleroderma Unit in London.

The effort of moving my 'tin man' body for this 12 hour BIG day out takes weeks of advance preparation, as well as recovery.

I still remain in the ‘fragile zone’.

However, it is always an honour and an extremely humbling experience to attend the Scleroderma Unit, and meet with other patients-

A huge thank you to Deani.

As well as, continue to impress Prof Denton with my symptom reversal after 20 years, from first having heard those life changing words ‘You have scleroderma and Raynaud’s’.

Initial Diagnosis.

I was delighted that my trip co-incided with a lovely, warm 20degree Celsius autumn day, in London.

This enabled me to have my photo taken for a second, with me wearing just my t shirt, without me ‘losing’ my blood circulation to my hands or feet, outside of the main front entrance, to this global expert specialist centre.

I had 2 fleece jumpers, and a waterproof with me, and I was wearing my winter ‘biker Ugg boots’, with thick thinsulate socks. And of course, my gloves.

27.9.17

30.11.16 - Eskimo outfit

For my best Raynaud’s symptom management, I have found that 'prevention is better than cure'.

Indeed, there is no cure, with various drugs being used to open the blood vessels and thereby lowering blood pressure.

The only medication which I take is Bosentan 125mg twice a day, which has reduced my digital ulcer frequency.

After my consultation, I went to visit Dr Kevin Howell, who celebrates his 25^th anniversary of working for the NHS this year.

Dr Howell is a world expert on Raynaud’s and every patient who visits the Unit will be familiar with his horrendous bucket of ice cold water test, upon their initial visit.

It is 19 years since I originally delved my hands into his bucket and I still cringe at the excruciating pain which this caused, evoking a Raynaud’s attack to my hands.

This equipment photographs the thermal (heat) emitted from the body part of interest.

The image below shows the heat transmitted by a normal, non Raynaud’s individual, following the ice bucket hand challenge, compared to that of a Raynaud’s patient- seen in the central image and right hand image of the frame.

A specific camera, a capillaroscopy machine, is then used to assess any permanent damage to the capillaries and blood vessels.

Read more, here.

We desperately need a cure for Raynaud’s. #RaynaudsFreeWorld

Living the dream, Raynaud’s and scleroderma style.

Raynaud's, Invisible Disablity, 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

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

Please DONATE to help fund medical research into the cause and cure for Raynaud's, at the Raynaud's Unit, The Royal Free Hospital, UK.

All of your monies will be used for medical research purposes only, lead being, the world trail blazer Dr Kevin Howell.

#RaynaudsFreeWorld #RaynaudsAwarenessMonth

Facebook Page: Raynauds Unit Royal Free Hospital

Twitter: @RaynaudsRf

Living the dream, hoping for a cure ....

Click here for Twibbon

An edited version of this article was published here, in my Column with Scleroderma News.
October 2017.

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.