Sunday, 19 June 2016

DAY 19: Calcinosis, Scleroderma Awareness Month 2016, Raynaud's, Autoimmune Rare Disease

DAY 19: CALCINOSIS 
Scleroderma Awareness Month 2016 
Raynaud's, Autoimmune Rare Disease   

DAY 19: CALCINOSIS 


Today’s topic is the debilitating, painful symptom of calcinosis.  

It is important to note that not every scleroderma patient will experience calcinosis, since no two scleroderma patients present with the exact same set of symptoms. 

Calcinosis is more prevalent in the diffuse subset of scleroderma. 

The intake of calcium in the diet does not have a direct correlation with calcinosis. 

As can be seen in the diagram, calcinosis is not specific to certain areas of the body, it can appear anywhere, but usually, at sites of soft tissue injury or pressure points, which includes the gums. 

The lumps of solid calcium can lie underneath the skin, being visible only by X-Ray, and are hard to touch, if near the outer surface. 

Calcinosis is extremely painful, especially with tight, scleroderma-like skin. The lumps will eventually work themselves to the surface of the skin, where they can be pushed out. This process can take years. 

Added complications can occur if the area becomes infected, requiring antibiotic intervention. Which of course, brings along added gastro-intestinal challenges. 

In my experience, the excision of a calcium lump is extremely painful, leaving a hole in the flesh, from where the lump has been. 

On a few occasions I have almost passed out with the pain when a lump finally becomes loose and can be removed, leaving a huge hole which eventually fills with blood. Deep breaths, help at this point! 

Removal is no guarantee that the calcium will be gone forever from that site, as the removal site can form more calcium. 

I have pitting and scars around my knees, nose, elbows, toes and fingers from where calcium lumps have been. 

The calcium can also be a soft, chalky-like liquid underneath the skin, which can be excruciatingly painful, if touched. 

Similar, to the lumps of calcium, the softer lumps can take years to work themselves to the surface of the skin for removal. 

This process being hindered by tight skin and a compromised immune and circulatory system, due to the nature of the scleroderma disease process.  



Although calcinosis is not a direct life threatening symptom when comparing to severe internal organ involvement, such as heart failure or renal crisis, it is a huge unmet need of the scleroderma patient. 

Currently there are no adequate treatments or medications for calcinosis. 

Some patients report a marginal improvement when taking the antibiotic Minocycline, personally, I saw no improvement. 

I have also spoken with patients who had undergone surgery for calcium removal, with the calcium only returning in time. I am not brave enough for this option being a reality for me! 

On a personal observational level, the calcium lump or liquid appears as sites of injury and pressure points, with tight skin, adding to the make-up ingredients. 

I have also noticed that Raynaud’s episodes / blue fingers and toes can help the calcium forming. 

Prof Herrick and her team at Salford Royal Hospital in Manchester, here in the UK, have a special interest in calcinosis research. 

With their most recent publication being published in the Scandinavian Journal of Rheumatology at the start of the year, concluding that:

‘The thumb is affected by calcinosis more than other digits, followed by the index finger. 

This observation provides insight into the pathogenesis of SSc-related calcinosis, which may relate more to repetitive trauma than to ischaemia.’ 

To learn more about Prof Herrick and her team, Click here

In my view, investment in research is needed as a matter of emergency to investigate the formation of solid calcium / bone-like lumps taking over scleroderma patient body. 

I am very much hoping that the Factor XIII trial being carried out by the clinical trials team at the Royal Free Hospital will reveal the calcinosis antidote.  
 
Read  Day 13   Scleroderma Awareness Month 2016. 


 


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: 

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#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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