Thursday 31 May 2018

CALCINOSIS - Unmet Clinical Need. Scleroderma Awareness Month, June 2018. Scleroderma, Raynaud’s, Autoimmune, Rare Disease

CALCINOSIS – Unmet Clinical Need
Scleroderma Awareness Month, June 2018 

Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  




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 image, 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. 

 


too much keyboard use, causing tissue damage and presenting as calcinosis

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.  

 
More Current Unmet Clinical Needs

GUM RECESSION, TOOTH EXTRACTS, Click here 

SOFT TISSUE, ULCERS, Click here  

TELANGIECTASIA, Click here 

SCLERODACTYL HANDS, Click here   

INVISIBLE DISABILITY, Click here 

RAYNAUD'S, Click here

GASTROINTESTINAL, Click here


To Read My Articles:


'Scleroderma Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here    


 


Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo.
  
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here   

Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here    

Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here   

Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here    


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


  

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.  


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

  

  
Last Update: Feb 2020.       



CALCINOSIS – Unmet Clinical Need
Scleroderma Awareness Month, June 2018 

Scleroderma, Raynaud's, Autoimmune Rare Disease. 



#RaynaudsFreeWorld #SclerodermaFreeWorld  

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