Monday 21 May 2018

Living The Dream, Scleroderma Style: In Between Medical Appointments, Raynaud's. Autoimmune Rare Disease

Living The Dream, Scleroderma Style: In Between Medical Appointments.
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  

Living with a systemic, chronic, degenerative disease, where the cause and cure still remain unknown, makes for a diary filled with medical appointments. 

In between which, symptom management is a full time job, in itself.

I have a strict daily routine in place, in an attempt to minimise the severity of my ongoing symptoms.

However, as every patient will surely agree, no day is exactly the same in relation to the Pandora’s Box, which the autoimmune rare disease, scleroderma, diagnosis brings.

My daily routine incorporates my diet, skin, Raynaud’s and ‘tin man’ demands.

Even after 20 years, it still remains an ongoing challenge for me, to attempt to minimise my symptoms.

The severity of my Raynaud’s involvement, keeps me under house arrest all year round.  



My sensitivity is such, that the smallest decrease in temperature, regardless of how warm it actually is, will trigger an attack in my hands and toes. My ears and nose may also become involved. 

Combined with calcinosis and digital ulcers, this makes for a very painful and debilitating reality. I highlighted more about this in my article for Rare Disease Day 2017, the clinical unmet needs. 

The British Society for Rheumatology (BSR) held its annual conference last week in Liverpool.

Sadly, I was unable to attend due to a relapse with my shingles pain, and a resilient digital ulcer on my right index finger, which has been in situ since March! 

Two courses of flucloxacillin have just about cleared the infection, bringing along an overgrowth of candida in my gullet. The skin has still not healed and the slightest touch sets off the most excruciating pain.

A thick, self made, padded bandage with minimal adhesive helps to protect the very tender, thin, red raw skin. 

However, I know that when it comes to digital ulcers, I am very lucky, even though their pain and management is extremely trying and soul testing. 

During the course of my global patient profiles campaign for Scleroderma Awareness Month 2017, every patient detailed how digital ulcers were a continual problem to them.  


Please include UK patient Deani in your prayers, as she is currently undergoing treatment for digital ulcers and necrotic tissue which has moved up in to her arm.

Over the years I have learnt via experience that should I push my body too much and not respect the demands of the multi complex symptoms, my body will protest with a vengeance. With fatigue being a constant, unwelcome, companion.

I was particularly encouraged to see that fatigue and sleep were subjects included within the recent BSR schedule. Along with several sessions on Systemic Sclerosis, sharing the most recent data.

I was extremely sad to not be able to attend the conference, especially as it was practically on my door step! However, as a ‘seasoned’ patient, I know that I must accept: my symptoms dictate. As well as, the difficulties of travelling with an invisible disability.

I have written about the Few Highs and Many Lows of living with this diagnosis, previously. 

Sadly, the lovely Maureen Schotterer from USA, was called back to her maker last week. Please include her husband George and her family in your prayers.

There are only a few weeks remaining, until the highlight of our year as patients – June Scleroderma Awareness Month, and 29th June, being, World Scleroderma Day

There are many projects already in the planning for 2018 awareness #SclerodermaFreeWorld.  

I will be updating the global patient profiles, highlighting the urgent need for investment in medical research, to improve our patient day to day reality.     

In celebration for World Scleroderma Day, 29th June, myself and UK patient Liz Leadbetter, have started a forum for sharing pictures / images of any craft or item which a patient has made / created, whilst awaiting in between their next medical appointment.   

We will then collate the images to share on World Scleroderma Day, showing the world how creative our global community is, and raising awareness at the same time. Please get involved! 

Here are some of my examples....   


In the meantime, this Scleroderma Olympian is in training for the Scleroderma Unit Family Day on the 19th May at the Royal Free Hospital. 

Living the dream, scleroderma style.         

Facebook Page: Raynauds Scleroderma Awareness Global Patients

Twitter, Instagram, Blogger, You Tube: @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.


An edited version of this article was published here, in my Column with Scleroderma News. May 2018.   



Scleroderma Family Day 2020

25th Anniversary Meeting

The Atrium, Royal Free Hospital, London, NW3 2QG

Chair: Professor Chris Denton


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  

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:

supported by a medicaldream team’ 
(expert specialist as the clinical lead).


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    


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. 
1st 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, 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:  



Twitter, Instagram, Blogger, YouTube, Facebook Page:

#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    

100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You. 


Last Update: Feb 2020.       

Living The Dream, Scleroderma Style: In Between Medical Appointments.
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  

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