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.
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.
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!
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.
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.
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!
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.
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.’
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.
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. |
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.
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:
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 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
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.
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
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: 
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
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:
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
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.
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
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
 |
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
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CALCINOSIS – Unmet Clinical Need
Scleroderma Awareness Month, June 2018
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
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