CALCINOSIS - Unmet Clinical Need
Scleroderma Awareness Month, June 2018
Scleroderma, Raynaud’s, Autoimmune, Rare Disease
www.justgiving.com/fundraising/sclerodermaunit-royalfree
#SclerodermaFreeWorld #RaynaudsFreeWorld
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 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.
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.
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.
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:
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
 |
| 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. |
'Scleroderma
Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here
Global Patient
Profiles Campaign Index, Click here
Importance of Medical
Research and Awareness Raising, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
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
'Being your own
awareness advocate', Click here
Scleroderma Awareness
Month Flashback 2017, Click here
Scleroderma Awareness
Month Flashback 2016, Click here
My 2016 Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click here
2016 Campaign Video, Click
here
March 2018 Autoimmune
Disease Awareness Month, 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 MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view the presentation, Click here
To view my article 'Why Global Collaboration is Important', Click here
All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as:
Early Diagnosis
Expert Specialist Centres
Access to innovative medicines
ALL being, crucial factors for best practice management and care.
To read my articles:
Raynaud's, Click here
This year, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, 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. Read more, here
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
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: June 2018
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