Raynauds Scleroderma Global Patients: If we only had more RESEARCH Investment for Scleroderma, Raynaud's, Autoimmune Rare Disease

If we only had more Research Investment,

Scleroderma, Raynaud's, Autoimmune Rare Disease.

www.justgiving.com/fundraising/sclerodermaunit-royalfree

#RaynaudsFreeWorld #SclerodermaFreeWorld

blog.raynaudsscleroderma.co.uk

Well today is Valentine’s Day!

As with all of the internal organs, systemic sclerosis can affect the heart.

It is therefore, crucial for the heart to be monitored at initial diagnosis, as well as, follow up, continued monitoring.

In my view, for the best patient care, an early diagnosis at an expert specialist centre is paramount for life survival.

I detailed more about heart involvement on Day 16 of my Scleroderma Awareness Month Campaign 2016.

In the film ‘The Wizard of Oz’, the tin man sings ‘if only I had a heart’.

Of course, I must mention my global ‘tin man awareness persona'.

This tin man is living the dream, nurturing her heart, being a rare disease patient advocate.

Rare Disease UK parliamentary reception 2016

2.3.2016 Rare Disease UK Parliamentary reception

However, the Pandora’s Box of my symptoms have kept me occupied with my dental involvement recently.

Gum recession can be experienced causing dental involvement requiring tooth extractions and increased susceptibility to infection, aided by a continual dry mouth.

Shrinkage to the soft tissue around the mouth and lips, causes thinning to the lips and makes mouth opening very difficult.

DAY 18 Scleroderma Awareness Month 2016, I detailed more about this.

I am extremely grateful to my dentist Dr Andrew Booth and Louise Doran for their continued patience and expertise.

I have dental check ups every 6 months, combined with hygienist appointments every 3 months. I have difficulty holding a tooth brush due to the physical limitation in my hands and fingers.

This very important symptom of scleroderma, dental / mouth involvement, is most definitely a current unmet clinical need.

I am devastated to have had 3 tooth extractions due to scleroderma. However, on the bigger picture scale, I know that this is a small irrelevance, compared to some of the organ devastation which other patients experience.

Sadly, I am not able to attend the 5^th World Systemic Sclerosis Congress which starts in Bordeaux, tomorrow. It has been my personal goal / gold medal, since the 1^st Congress, to attend.

But, this Scleroderma Olympian has had to accept that further training is still required, for travel and nights away.

The Congress provides a fantastic forum for anyone who has an interest in scleroderma. The most recent up to date developments, encompassing the entire disease landscape, are showcased.

Research is the key

#SclerodermaFreeWorld #RaynaudsFreeWorld

Abstracts from the 4^th World Systemic Sclerosis Congress held in Lisbon, highlighted the many different areas which are being explored for research purposes.

I am delighted to have recently become a Patient Research Ambassador for the Dermatology and Musculoskeletal departments at the Royal Free Hospital

2018 Key Dates include The Family Day, Scleroderma Unit on the 19^th May.

I will be celebrating my 20^th year of being a patient at the Unit – I very much hope that you will join me?!

In the meantime, Rare Disease Day February 28^th, is only 2 weeks away.

The theme to this years Rare Disease Day is Research.

2017 Rare Disease Day Flashback

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

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.

I highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017 Campaign.

Although, rare disease patients are few in number, eg. 2.5 million scleroderma patients worldwide (as by the World Scleroderma Foundation), the commonalities and golden hallmark for each rare disease patient are the same:

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).

I will be taking part in a live Twitter feed on the 27^th February, highlighting the importance of medical research to the rare disease patient.

Please join me: @SclerodermaRF @cosmicfairy444

Living the dream, scleroderma style.

Please DONATE to help fund medical research at The Scleroderma Unit,The Royal Free Hospital, London where 100% of all of your monies will be used for medical research purposes only. Thank You.

‘If only we had more research’….

Wishing you a heart-felt Valentine’s Day, loving life, feeling good.

#SclerodermaFreeWorld #RaynaudsFreeWorld

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

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