Skin Tests
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
The skin is the largest organ
in the body and more often than not, will be affected by scleroderma, as the
name ‘sclero’ - thickening, ‘derma’ - skin, implies.
The exceptions are a SINE scleroderma diagnosis, as well as, a limited scleroderma diagnosis, could present with little or no skin involvement.
The exceptions are a SINE scleroderma diagnosis, as well as, a limited scleroderma diagnosis, could present with little or no skin involvement.
I wrote a more general article
about skin involvement and the skin symptoms which I presented with in 1997, Click here
One of the usual diagnostic
tests carried out to determine a scleroderma diagnosis is a skin biopsy.
Other tests, include those which I discussed, here
Other tests, include those which I discussed, here
I am delighted to have avoided
a skin biopsy- an invasive painful test on my scleroderma tight sensitive skin,
for 19 years now.
However, the growing lump on my forehead of the last three years has been a cause for concern and intrigue, further to me being prone to calcium lumps, which is now one of my long term scleroderma symptoms.
Although calcinosis is not as life threatening as organ damage, it can be extremely painful and contribute to organ damage.
It is my view that calcinosis is one of the biggest unmet needs of the stable scleroderma patient. I discussed in more detail about calcinosis, here.
However, the growing lump on my forehead of the last three years has been a cause for concern and intrigue, further to me being prone to calcium lumps, which is now one of my long term scleroderma symptoms.
Although calcinosis is not as life threatening as organ damage, it can be extremely painful and contribute to organ damage.
It is my view that calcinosis is one of the biggest unmet needs of the stable scleroderma patient. I discussed in more detail about calcinosis, here.
The lump on my forehead
appeared as most of my calcium lumps have appeared – pain and tenderness to the
skin at the site of injury, and then gradual discolouration to a white-ish
colour, similar to a spot.
Although, they are actually a lot different to a spot, as spots can be squeezed and these lumps can not, and which, I have hours of experience of squeezing and prodding, and the scars to show for it.
Although, they are actually a lot different to a spot, as spots can be squeezed and these lumps can not, and which, I have hours of experience of squeezing and prodding, and the scars to show for it.
The start of the red lump can
just about be seen on this photo, which was used for Raynaud’s and Scleroderma
awareness in The Daily Mail in 2013. View article, here
Further to the lump’s
appearance I was referred to my local Dermatology clinic for an assessment and
measurements to be taken.
I was advised at this time, that a skin biopsy would be an option, in an attempt to identify more about the lump.
However, due to my years of experience with calcium lumps, I chose to delay any invasive surgery, mindful that my skin does not repair as quickly upon injury, and another scar, this time on my face.
I was advised at this time, that a skin biopsy would be an option, in an attempt to identify more about the lump.
However, due to my years of experience with calcium lumps, I chose to delay any invasive surgery, mindful that my skin does not repair as quickly upon injury, and another scar, this time on my face.
As well as, I am susceptible
to infections due to 7 years of immunosuppressant use, even though I am now 12
years immunosuppressant free.
Being a long term patient with a rare disease with no cure, and little known about the cause, has taught me that ‘prevention is most certainly better than cure’ especially when it comes to infections which may have been avoided, such as coughs and colds.
Being a long term patient with a rare disease with no cure, and little known about the cause, has taught me that ‘prevention is most certainly better than cure’ especially when it comes to infections which may have been avoided, such as coughs and colds.
My gastro-intestinal system is
still in recovery from having to have taken continuous antibiotics for my
digital ulcers, prior to taking bosentan, along with the damage to my GI system
caused by scleroderma.
I wrote about my diet changes, here
I wrote about my diet changes, here
As I stated above, I really am
elated that I managed to get to year 19 of my diffuse scleroderma diagnosis
without having to have a skin biopsy.
And, I am extremely grateful to the Dermatologist Doctor, Dr Tiberiu Bontea, at Ormskirk General Hospital (my local Dermatology center) for his expertise and patience over the last 18months, whilst I plucked up the courage to have the procedure, as advised from the outset.
And, I am extremely grateful to the Dermatologist Doctor, Dr Tiberiu Bontea, at Ormskirk General Hospital (my local Dermatology center) for his expertise and patience over the last 18months, whilst I plucked up the courage to have the procedure, as advised from the outset.
On the day of the procedure, I
was very much comforted knowing that Dr Bontea had taken into account my
scleroderma ‘special needs’ – tight skin and compromised blood supply combined
with slow healing tissue repair issues, and so, he used a type of anaesthetic
which would not cause extra contraction of my blood vessels (lignocaine).
The medical requirement of
this procedure shows the importance and need of a ‘shared care
multidisciplinary approach’ for best practice and care for the scleroderma
patient.
I wrote about the necessity of expert specialist centers, here
I wrote about the necessity of expert specialist centers, here
The entire procedure took
about 20 minutes, with only slight discomfort at the point of entry of the
needle administering the anaesthetic, lasting a minute or so.
Dr Bontea kindly let me look at the ‘specimen’ which had been excised, prior to it being sent for further testing. It did not look like a calcium lump.
Dr Bontea kindly let me look at the ‘specimen’ which had been excised, prior to it being sent for further testing. It did not look like a calcium lump.
I am extremely grateful to Dr
Bontea and the nurses for making the procedure as pleasant as it could be.
As well as, I am very grateful for my fellow long term scleroderma survivor friend Leyla, for her support, when I was having to accept that the biopsy road was the only avenue available, and of course, Thank You to all of my facebook global scleroderma friends for your comments and support and for sharing your personal experience of this scleroderma ‘added extra’.
As well as, I am very grateful for my fellow long term scleroderma survivor friend Leyla, for her support, when I was having to accept that the biopsy road was the only avenue available, and of course, Thank You to all of my facebook global scleroderma friends for your comments and support and for sharing your personal experience of this scleroderma ‘added extra’.
This photo was taken at the
end of the procedure, and 4days later there is little change.
In the meantime, I am under house arrest in an attempt to provide the best conditions for a ‘speedy’ healing recovery.
Living the dream, scleroderma style, hoping for a cure.
In the meantime, I am under house arrest in an attempt to provide the best conditions for a ‘speedy’ healing recovery.
Living the dream, scleroderma style, hoping for a cure.
An edited version of this article was published here, in my Column with Scleroderma News.
October 2016.
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
2018 Scleroderma Awareness Raising and Medical Research, Click here
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 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.
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
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 |
For latest updates follow / subscribe:
@SclerodermaRF
@RaynaudsRf
@SclerodermaRF
@RaynaudsRf
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Alternatively, to make a direct donation to fund medical research via the Royal Free Charity, Scleroderma Unit, Click here
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
Skin Tests
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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