Raynauds Scleroderma Global Patients: October 2017

How To Diagnose Raynaud's, The Invisible Disability.

Invisible Disabilities Week, 15-21 October.

Raynaud’s Awareness Month, October 2017.

Scleroderma, Raynaud's, Autoimmune Rare Disease.

www.justgiving.com/fundraising/sclerodermaunit-royalfree

www.justgiving.com/fundraising/raynaudsunit-royalfree

#RaynaudsFreeWorld #SclerodermaFreeWorld

blog.raynaudsscleroderma.co.uk

‘Invisible Disabilities Week’ started on Sunday 15th October, combining, with the current ongoing ‘October Raynaud’s Awareness Month’ Campaign.

Making this week, a very busy week, for our global patient community with awareness raising opportunities.

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.

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’

Hottest day of 2013

My Raynaud’s symptoms keep me under 'house arrest' all year round.

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.

However, should I put too much pressure / wear and tear on the soft tissue of my digits, I will start an ulcer or calcinosis.

I currently have a pesky one which appeared following my Patient Profile campaign for Scleroderma Awareness Month 2017 efforts, and still remains insitu further to two lots of flucloxacillin 500mg, four times a day.

Click here, for a flashback reminder.

This reality is turning into my 'digital ulcer nightmare', as antibiotics upset my gut flora.

My diet is critical to maintaining my energy levels and optimum symptom management.

The reduced blood flow in my hands during a Raynaud’s attack, makes for the perfect conditions for an ulcer or calcinosis to form.

This is why it is so important for me to prevent any Raynaud’s attack in the first place.

Ulcers and calcinosis can take months / years to heal, and are extremely debilitating, painful and high maintenance in the meantime.

Making every task, including bathing, to require gloves to be worn.

I am fortunate in that I have never experienced gangrene, which follows, should the infection had not had an early enough medical intervention.

Raynaud’s can therefore, be VERY serious if not managed properly.

The discolouration of the digits, or any of the other body parts affected, (this varies in individuals), is a non invasive, visible indication as to Raynaud’s phenomenon.

To identify the level of blood vessel involvement and to distinguish between primary Raynaud’s (Libby and Jane), and secondary Raynaud’s, two diagnostic tests are carried out.

These tests are extremely helpful in determining whether there is the presence of an underlying condition, such as an autoimmune disease.

Thermograph Imaging

This process requires the body part, hand or foot, to be immersed in water at a set temperature, for a certain length of time.

The heat generated from the body part is then measured over time using the thermography equipment. This indicates the level of blood flow and any possible impairment.

To view Thermograph Video, Click here

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

Nailfold Capillaroscopy

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

In a normal and primary Raynaud’s patient the blood vessels will appear symmetrical and smooth-like.

In a patient with scleroderma or other autoimmune disease, the vessels will have become distorted in their structure and appearance, thus impacting on blood flow impairment.

The Nailfold Capillaroscopy equipment costs around £1,500

To read more about Nailfold Capillaroscopy equipment, Click here

Huge thanks go to Dr Howell for making these images available.

Kevin Howell PhD ASIS 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 25^th year.

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

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

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

October 2017.

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.