Wednesday, 29 March 2017

Living the dream as the real-life 'Tin Man', Scleroderma, Raynaud’s, Autoimmune Rare Disease

Living the dream as the real-life 'Tin Man' 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  

 


'I am The Real Life Tin Man' 


For today’s article and to tie in with Autoimmune Disease Awareness Month of March, I am going to focus on the overlap symptom of Musculoskeletal involvement. 

This symptom of stiff, inflamed, painful joints and muscles can be seen across a range of the autoimmune diseases, with arthritis being the most prevalent and commonly known, and diffuse scleroderma mimicking it. 

Along with, FATIGUE, adding to the mix.

My diffuse scleroderma diagnosis has quite literally turned my body into me being the ‘real life tin man’.  




I experience continual muscle and joint stiffness which increases in severity if I expect too much of my body or push my body to do too many tasks in one day.   

Similar to the joint swelling seen in rheumatoid arthritis, all of my joints are painful, stiff and swollen, with analgesic / steroid medication providing marginal, borderline relief. 

I will start my day by bathing with liquid paraffin to ease my skin symptoms, which, after 19 years since diagnosis, my 'skin is cured from scleroderma'.
 
Bathing provides a circulatory boost which settles my Raynaud's symptoms and also provides some easing of the continual musculoskeletal pain. 

Sadly, I am no longer able to jump in and out of the bath, similar to Daisy from the 1970s TV programme ‘Dukes of Hazard’ jumping in and out of her car.

Since my diffuse scleroderma diagnosis in 1997, I can not remember a day whereby I have been pain free. 

Living in constant chronic pain is a mission within itself, without the added extra scleroderma symptom specialities (GI, ulcers, calcinosis etc) sprinkled into the mix. 

I focussed on several of the current unmet clinical needs, here.   




I have to be super organised with planning my time in relation to managing this highly demanding ‘tin man’ like symptom. 

Medical appointments clearly take priority in my diary, and should a trip to see one of the world’s leading scleroderma experts, Prof Chris Denton, at the Royal Free Hospital in London be due, weeks of advance preparation will have been started. 

As well as, I know that for the 10 days following a ‘BIG’ day out, I will be unable to function even less than usual, with an elevated level of pain and tiredness which words can not justify. 

I detailed more of my time management style, here.
 
Since coming out of the scleroderma closet to the world in 2013, to raise awareness of this rare, extremely challenging disease, I have made several headlines including:  



To read the full article, Click here 


To read the full article, Click here




To read the full article, Click here


To read the full article, Click here











Although headline grabbing, this symptom of Scleroderma is most debilitating and still remains clinically inadequately managed in terms of quality of life for patient management. 

It certainly does feel as though my body has been ‘wrapped in barbed wire and then dipped in concrete’ as by the Daily Mail headline of last year, for June Scleroderma Awareness Month.
 
Having been a regular gym frequenter, up to, and during the first few years of my diffuse scleroderma diagnosis, sadly, this activity is now a long distant memory of the last 18 years. 

The most basic of tasks such as getting dressed, on some days, can feel similar to a Mount Everest expedition, with the energy of a cardboard cut-out having been left out in the rain overnight.

It is now nearly 12 months since I purchased an electric scooter which I use for dog walking. I wrote about this, here.
 
Over the years I have attended several physiotherapy sessions with little gain and lots of pain, and sheer exhaustion from trying. 

However, it still remains a personal goal of mine, to return to the gym, one day. In the meantime, I am working on my sofa surfing skills, allowing my tin man body to rest and heal- reminding myself that, my job for today is to simply ‘get better’. 

I discussed more of the autoimmune rare disease similarities, here.
 
Our next big awareness date as a global community is June for Scleroderma Awareness Month, and of course, June 29th is World Scleroderma Day





Living the dream, Scleroderma style.  
 



An edited version of this article was published here, in my Column with Scleroderma News 
March 2016. 



  

Scleroderma Family Day 2020

25th 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  


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).

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. 
 
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

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



 

For latest updates follow / subscribe:  

@SclerodermaRF 

@RaynaudsRf 

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 as the real-life 'Tin Man' 
Scleroderma, Raynaud's, Autoimmune Rare Disease. 

#SclerodermaFreeWorld  #RaynaudsFreeWorld  









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