SclerodermaRF: The Invisible Disability. Scleroderma, Raynaud's, Autoimmune Rare Disease.

The Invisible Disability.

Scleroderma, Raynaud's, Autoimmune Rare Disease.

www.justgiving.com/fundraising/sclerodermaunit-royalfree

#RaynaudsFreeWorld #SclerodermaFreeWorld

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14th - 20th October was 'Invisible Disabilities' awareness week.

Raynaud's, and scleroderma can be invisible to the untrained human eye.

Hottest day of 2013

The invisible disabilities association says:

'People often ask what the term invisible disability means.

To define invisible disability in simple terms is a physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker.

Unfortunately the very fact that these symptoms are invisible, can lead to misunderstandings, false perceptions and judgments.'

Invisible disabilities UK, describe an invisible disability as,

‘An invisible disability that cannot be seen, may not require a wheelchair, crutches or a blue badge.

Mental Health issues such as depression, stress, anxiety and bipolar can affect individuals and their families.

The general public can be totally unaware that the individual is suffering and just assume and label as ‘miserable’, ‘attention seeking’, ‘pessimistic’ and given a wide berth, when what they may just need is a bit of understanding and support.

Physical disabilities which do not require the use of wheelchairs or crutches include lupus, ME, chronic fatigue syndrome and fibromyalgia.

These are not usually life threatening illnesses but can affect the quality of life such as pain 24/7, limited mobility, being unable to enjoy a good day out or extreme fatigue.’

Although not directly referred to in the description above, the diagnosis of scleroderma along with secondary Raynaud’s can most certainly be classified as an 'Invisible Disability'.

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

I remind myself daily that, I am a 'very lucky patient', for, I have now reached my 21st anniversary since my initial diagnosis.

I was told at that time, I had a 15month prognosis, due to the aggressive attack, which the diffuse form of the disease, was having on my body.

I am eternally grateful to Prof Chris Denton and the NHS for keeping me alive.

As well as my other dream team members.

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

Andrea, Pharmacist Southport Hospital, and I, Aug 2017

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

However, sadly, during the course of the last few decades, I can not remember the last time that I have had a 'pain free' day.

On Christmas Day 2017, I developed shingles.

This lingering pain has totally zapped 'the wind from my sails', throughout this year.

I am reluctant to take any of the recommended narcotic therapies since they cause me to vomit and black out. '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'.

This 'invisible aspect' also impacts upon personal independence and interactions with the general public.

One particular personal experience, happened a few years ago. In 2015 I had the pleasure of being invited to present at the annual conference of the British Society for Rheumatology.

The location for that year was Manchester - only 40miles away from Southport, with a direct train railway line.

During my travel adventure via public transport, my 'invisible disability' caused me humiliation, by way of 'looking ok'. Maybe I should wear a sign around my neck, Paddington, Sandwich-board style, or maybe a teal ribbon tattoo?

As patients living with a degenerative Rare Disease, education and awareness of such, come along as an optional duty, sadly.

This Scleroderma Olympian is in training to maximise the hibernation season of winter. Planning a busy 2019, making scleroderma, Raynaud's and the urgent need for medical research investment, visible globally.

October is Raynaud's Awareness Month and my 50 shades of blue 'party trick' time of year.

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.

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).

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.

Raynaud's Awareness Twibbon for social media.

Follow:

Facebook Page: Raynauds SclerodermaAwareness 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.

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

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