Raynauds Scleroderma Global Patients: Nemesis Season: Winter. Raynaud's, Scleroderma, Autoimmune Rare Disease. Nicola Whitehill

Nemesis Season: Winter

Scleroderma, Raynaud's, Autoimmune Rare Disease.

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Here, in the northern hemisphere, we are in the midst of winter.

For me, in an attempt to minimise my Raynuads symptoms, hibernation began in October.

This entails being under house arrest, unless I really do need to go out.

Such ‘special days’ out are reserved for medical appointments and juicing ingredient re-stocks (living the dream, scleroderma style).

I wrote about the full time job of managing my Scleroderma symptoms, here

As well as, I detailed my ‘Scleroderma diet’, here

I have learnt from experience, over the course of the last two decades, that my Raynaud’s symptoms are best managed by maintaining a constant temperature around me, as much as possible.

In addition, to wearing multiple layers of thermal garments and heatwarmer accessories, making for the desertion of my inner Bond Girl persona, years ago.

September 2017 marks my 20^th year anniversary since diagnosis, whereby I was given a fifteen month prognosis by my diagnosing doctor, who led my care for the first twelve months of diagnosis, before I changed to Prof Denton and the Scleroderma Unit at The Royal Free Hospital, and to whom I eternally grateful, having now reversed my skin involvement back to healthy skin. Read more, here

I have tried all of the medications currently licensed and prescribed for Raynaud’s, with little clinical affect, other than intense headaches, dizziness and nose bleeds.

I have been taking Bosentan 125mg twice a day, continuously, for the last four years, and have seen a marked, and most welcome, improvement with the reduction in digital ulcers I now experience.

I am extremely grateful that my ulcers did not develop into gangrene or tissue death resulting in amputation, which I know for some patients, this is their Raynaud’s reality.

Unfortunately, my Raynaud’s remains extremely sensitive, even with taking Bosentan.

I can experience an attack which compromises of colour changes (blue, white, black, red) to my hands and feet, accompanied by intense muscle spasms throughout my entire body.

This is a most unpleasant, horrendous and painful experience, making for this social butterfly being transformed into a confined eskimo Michelin Man, in an attempt to reduce the attacks.

The level of tiredness which follows an attack is beyond exhausting.

Raynaud’s can present on its own as well as secondary to another diagnosis, such as Scleroderma, where it is known as ‘secondary Raynaud’s’.

There is currently no cure to this extremely debilitating and painful condition, requiring much needed financial investment into medical research to improve the understanding of what causes the blood vessels to spasm, as well as, what biological processes need to be activated to prevent it.

Further to the success of the Show Your Colours (SYC) for Raynaud’s event in October, Raynaud’s Awareness Month, myself and the SYC Raynaud’s team have set up a Just Giving page for the Raynaud’s Unit at The Royal Free Hospital.

100% of the fundraising monies and donations will go towards medical research led by Dr Kevin Howell and Prof Denton, who are world leaders and authorities in Raynaud’s.

I detailed further, the medications and management of Raynaud’s in the UK, here

as well as, I detailed my temperature sensitivity, here

This is going to be a very busy year for raising awareness. Increased commitment for medical research investment will provide the eureka moment needed for unlocking the Raynaud’s and Scleroderma code.

With the Scleroderma and Raynaud’s patient in the meantime, living in the hope that, that moment will happen in their lifetime.

Let’s make this happen…. #SclerodermaFreeWorld #RaynaudsFreeWorld

Here is a visual for awareness events which you may be interested in…. Rare Disease Day is February 28^th, with ‘Medical Research’ as the theme. Follow the Facebook page for regular updates.

This is my first article for 2017, and so, I would like to take this opportunity to wish you a very Happy year ahead, feeling good….. Living the dream, Scleroderma style.

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

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

For latest updates follow / subscribe:

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@RaynaudsRf

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Raynauds Scleroderma Awareness Global Patients

#SclerodermaFreeWorld #RaynaudsFreeWorld #Research

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

Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here