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

Scleroderma Awareness Month, June 2018

Scleroderma, Raynaud's, Autoimmune Rare Disease.

www.justgiving.com/fundraising/sclerodermaunit-royalfree

#RaynaudsFreeWorld #SclerodermaFreeWorld

blog.raynaudsscleroderma.co.uk

1^st June is the start of Scleroderma Awareness Month, with the 29^th June being World Scleroderma Day.

This is OUR opportunity to showcase the rare disease, scleroderma, to the World. In the hope to raise awareness of this health reality, in all of its guises.

Whether it be awareness for fundraising purposes for investment in research, for that oh so desired cause and cure, or, awareness, for education purposes.

This is OUR day to put the spotlight on the rare disease which we live with, 365 days of the year, with no holiday break from it. With hope and pain, as our constant companions.

2017 Flashback

2016 Flashback

Sadly, this Scleroderma Olympian did not make it to the Scleroderma Unit Family Day on the 19^th May at the Royal Free Hospital, London.

As heart wrenching as it was, I had to make the executive decision that I was not physically able to attend this informative annual event. This is due to a combination of current health issues, which would most certainly be exacerbated by the physical exertion of a BIG day out.

My body is still recovering from my shingles outbreak at Christmas, and remains in the ‘fragile zone’. Along with the Pandora’s Box continuing to bring unwelcome surprises.

My Raynaud’s sensitivity keeps me under house arrest all year round. By staying at home, I can attempt to minimise the number of daily attacks by maintaining a constant, surrounding temperature.

The digital ulcer which appeared in March, on my right index finger, still remains in situ, along with the continual, agonising pain.

Even after 20 years, the reality of living with this ‘fun snatcher’ disease, continues to be a constant symptom juggling, management challenge.

My diary is kept busy with the multiple medical appointments.

For me, managing my symptoms, combined with fatigue, mobility challenges and my nutrition / diet regime is a full time job!

Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo.

I was very disappointed to have missed Prof Chris Denton presenting a plaque to Debby, the late, very brave, Kevin’s wife, and Michelle, their daughter.

Debby, her family, friend Ryan and other friends, organised a charity golf day last summer.

An amazing total of £2000 was donated for medical research at the Scleroderma Unit, The Royal Free Hospital.

The plaque is to be placed on the side of a specialised freezer unit used for medical research, which the donation money helped to purchase.

Huge thanks and eternal gratitude go to Debby and Ryan for such a kind and generous donation.

Due to the success of the day, the event is to be held as an annual extravaganza, in Kevin’s memory.

I had the pleasure of meeting Kevin, at the Scleroderma Unit, several months prior to his passing. We were at the medical imagery department, having photographic images taken of our disease progression.

Seeing the tightness of Kevin’s skin, took me back to my initial year of diagnosis, 1997.

I remember showing Kevin that I could now outstretch my arms and my skin was slowly regaining its elasticity.

We joked together that, at least we now had a ‘claim to fame’, as Prof Chris Denton had requested the images, with view for future use within a hardback educational book about scleroderma.

This aspect of fellow patients dying from their disease progression, is exceptionally heart breaking and hard for me, to take in, and of course, my prayers are with their families.

However, I know that I am blessed to have made it to my 21^st year.

This super charges my personal efforts in utilising my skills in the best way which I can to help achieve the / my ultimate dream – a Scleroderma Free World.

The Awareness Month of June, along with World Scleroderma Day, 29^th June, are our golden ticket / opportunities to making the ultimate dream, a reality – a Scleroderma Free World.

This year, 2018, an online Facebook event has been created for 29^th June, World Scleroderma Day by UK patient Lizzy.

Liz and I have shared some of our creations which we have previously made for awareness purposes, or, for fundraising monies / donations.

We hope to collect fellow patient creation images, and combine them all together, making a video, similar to the global patients video.

Here is my self made pattern and creation:

Please get involved and share your photos!

Living the dream, scleroderma style.

Follow:

Facebook Page: Raynauds Scleroderma Awareness Global Patients

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

#SclerodermaFreeWorld #RaynaudsFreeWorld

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. No wages / admin costs.

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

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