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  



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. 


To read my articles: 


Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here   

March Autoimmune Disease Awareness Month 2018, Click here   

Global patient video, Click here   

Becoming a Patient Research Ambassador for the NIHR, Click here  

If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here   


Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     
 
Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        
The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here


Key Event Dates 2018, 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, Click here    



World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, Click here   


Why Global Collaboration is important to the Rare Disease Patient, Click here      



RARE DISEASE DAY:
The theme to this years Rare Disease Day is Research

Rare Disease Day 2018 – Research, Taking Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here     

2016 Rare Disease Day Patient Voice
2016 Rare Disease UK Parliamentary Reception   

2017 Rare Disease Day Flashback  
  




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. 

VIDEO



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: 

Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines

Where MEDICAL RESEARCH investment is VITAL.

Research is the key. Abstracts from 2016 World Congress, Click here


Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - here



The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19th May 2018. Browse the program, here

This year, I am celebrating 20 years of being a patient at this world leading expert specialist research centre. 

Sept 2017


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.
I am truly humbled and inspired by their work ethic. 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 diagnosing doctor, that I was looking at a 15month prognosis. 

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.
  
For latest updates follow: 

Facebook Page:

Twitter: @SclerodermaRF  @RaynaudsRf  


#SclerodermaFreeWorld           #RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease  

Living the dream, scleroderma style.  


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. No wages or admin costs. Thank You.
#HOPE 


 

Last Update: April 2018




 

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