Monday, 20 June 2016

DAY 20: Bones, Joints, Muscles, Scleroderma Awareness Month 2016, Raynaud's, Autoimmune Rare Disease


DAY 20: BONES, JOINTS, MUSCLES
Scleroderma Awareness Month 2016 
Raynaud's, Autoimmune Rare Disease


DAY 20: BONES, JOINTS, MUSCLES 

Most scleroderma patients will experience symptoms relating to their musculoskeletal system, including their bones, and in some cases this can lead to osteoporosis.  

Again, it is important to note that no two scleroderma patients will present with the exact same symptoms, and the Bone, Joint, Muscle involvement can vary in each subset. 

All of my joints are swollen, stiff and painful. 

This includes my toes, feet, ankles, knees, hips, elbows, shoulder, neck, wrists and hands. 

These symptoms are an overlap with rheumatoid arthritis. 

The above image shows an Xray where damage to the wrist joint has required the patient to need surgical intervention. 

Thanks go to the UK patient Alex for sharing her image for awareness purposes. 

As well as, huge thanks to the UK patient Vanessa, for sharing photos of her hands whereby her finger curling, caused by scleroderma, can be seen quite clearly. 

This makes for most tasks, even the most basic, extremely difficult, making independence almost non existent. 



I have used my ‘tin man body’ symptoms as the catalyst to raise awareness of the rare disease, scleroderma, in the mainstream global media. 

This is the most recent headline: 'It feels like my body is wrapped in barbed wire and dipped in concrete'.


To see more media articles, I focussed on this, on Day 10  Scleroderma Awareness Month 2016.

I have also written about my Mobility issues previously.  

Along with the Fatigue, which is a constant companion. Day 14 Scleroderma Awareness Month 2016. 

Before diagnosis, I used to work out at the gym 4 times a week, and in particular, weight training, which made my muscles quite shapely and strong. 

Sadly, my gym days are a distant memory from nearly two decades ago, as, my muscles are now, weak and tender. 

Over the last few years, should I put my body through too much physical exertion, my muscles will tremor causing my body to shake, with bed rest being the only solution.

Quite often, exercise is encouraged in arthritis patients to keep the joints supple. 

With some scleroderma patients, even with all of the best will in the world, exercise is not a possibility, as it makes the symptoms worse, ie pain, swelling, inflammation, fatigue etc. 

I very much admire my fellow scleroderma patients who are able to exercise, as my ‘tin man’ body feels as though I have been dipped in concrete and wrapped in barbed wire, as the headline states! 

This makes movement feel as though, I am carrying lead weights in each limb. 

I have constant chronic back pain which makes it impossible for me stand or sit for medium to long time periods, all contributing to the ‘tin man’ effect. 

I focussed on this debilitating and life changing aspect of the scleroderma patient experience on Day 25 Scleroderma Awareness Month 2016 ~ living the dream, hoping for a cure!

To read similar articles:

Living the dream as the 'real life tin man', Click here  

Ah, great, another day to spend in bed, said no Raynaud’s scleroderma patient, Click here 




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

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       


Raynaud's, Click here    


World Scleroderma Day 29th June 2016, Click here

World Scleroderma Day 29th June 2017, 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  

More unmet clinical needs  

Rare Disease Day 2016



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

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. Thank You. 
#HOPE 


 

Last Update: April 2018




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