How to diagnose, Click here
In 1997 I was diagnosed with scleroderma and given a 15month prognosis. In 1998 I became a patient at the Scleroderma Unit. The cause and cure to both Scleroderma and Raynaud's remain unknown. Please donate to help fund medical research where 100% of your donation will be used for research purposes only. The Royal Free Hospital has the largest centre specialising in scleroderma in the UK led by Professor Chris Denton. #SclerodermaFreeWorld #RaynaudsFreeWorld #Research
Saturday, 29 October 2016
Friday, 28 October 2016
The Importance of an Early Diagnosis and Medical Research in Scleroderma and Raynaud's
The
Importance of an Early Diagnosis and Medical Research.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
Living with a rare disease, is quite frankly, a most daunting experience in every way imaginable.
The mystery of the biological cause combined with ‘hit and miss’ medication options, due to there being no known cure, makes for 'Hope' being a permanent companion, to the rare disease patient.
Sadly, the current data shows
that most rare disease patients will wait on average at least 5 years before
receiving a diagnosis. In relation to my diagnosis of Scleroderma (systemic
sclerosis) and Raynaud’s, this length of time would have most definitely caused
irreversible life threatening damage to my body.
Scleroderma is a chronic
autoimmune disease which affects the connective tissue and vascular systems of
the body.
Raynaud’s is the constriction of blood vessels throughout the body, most usually at the extremities (hands and feet), causing discoloration and intense pain.
Currently, there is no known cause or cure to either Scleroderma or Raynaud’s.
Raynaud’s is the constriction of blood vessels throughout the body, most usually at the extremities (hands and feet), causing discoloration and intense pain.
Currently, there is no known cause or cure to either Scleroderma or Raynaud’s.
Treatment options are targeted at symptom suppression. In my
situation, I have Raynaud’s secondary to Scleroderma. Raynaud’s can also
present on its own without any other medical condition.
October is Raynaud’s awareness month.
October is Raynaud’s awareness month.
I consider myself to be a
lucky rare disease patient in that I only waited a matter of months for my
symptoms of tight puffy skin, swollen joints and blue fingers, to be
interpreted into a diagnosis, following a specific blood test.
I must admit, I have had much better days than that autumnal day in 1997, aged 24.
However, the diagnostic label did provide relief, to finally know what was happening to my body.
I must admit, I have had much better days than that autumnal day in 1997, aged 24.
However, the diagnostic label did provide relief, to finally know what was happening to my body.
Intense immunotherapy and
chemotherapy agents were started, with an initial prognosis of 15months due to
the severity of my symptoms and the aggression of the disease.
After a year of taking this toxic pharmaceutical combination with little symptom improvement, I swapped my medical care to the Scleroderma Unit expert centre at the Royal Free hospital in London, which was then headed up by Dame Prof Carol Black, now Prof Chris Denton, and to whose medical expertise I am eternally grateful for.
After a year of taking this toxic pharmaceutical combination with little symptom improvement, I swapped my medical care to the Scleroderma Unit expert centre at the Royal Free hospital in London, which was then headed up by Dame Prof Carol Black, now Prof Chris Denton, and to whose medical expertise I am eternally grateful for.
Two ‘very critical’ years
followed. My symptoms finally stabalised following a further six years of
chemotherapy infusions, combined with immunosuppressant agents.
I am now delighted to be 13 years chemotherapy free, although, my entire lifestyle and quality of life has been totally turned upside down due to my diagnosis.
Read more, Click here
I am now delighted to be 13 years chemotherapy free, although, my entire lifestyle and quality of life has been totally turned upside down due to my diagnosis.
Read more, Click here
I
consider myself to be a 'lucky' scleroderma patient in that I have
minimal internal organ damage. My Gastro-intestinal system and
musculo-skeletal system have been affected the most.
Read more about my 'tin-man like symptoms', here
Read more about my 'tin-man like symptoms', here
Some
patients experience irreversible internal organ damage which could be
life threatening or the patient may require an organ transplant as a
final option. I am extremely grateful that this is not my reality.
To read about the miracle who is Alice from Switzerland who has had a double lung transplant, Click here
Clearly, an early diagnosis is essential to prevent life threatening damage.
To read about the miracle who is Alice from Switzerland who has had a double lung transplant, Click here
Medical research provides huge
hope to the rare disease patient.
The hope being that a medic / scientist will have the ‘eureka’ moment to identify why the body is doing what it is doing, put a stop to it and press the reset button for a return to wellbeing and the ability to live ‘a normal life’, which is not ruled by medical appointments and symptom demands. As is, my current reality.
Medical research can be
painstakingly slow due to various factors.
This includes low numbers of rare disease patients eligible to take part, posing a difficulty for sound, scientific, statistically significant conclusions to be drawn.
This could be improved for the rare disease patient, by way of expert centers from around the globe collaborating together with their medical research.
The Eurordis European Reference Networks (ERNs) initiative supports this method of collaboration.
In my view, there is a best practice duty owed to the rare disease patient for medical research global collaboration.
To view my post 'Why Global Collaboration is so Important to the Raynaud's Scleroderma patient', Click here
This includes low numbers of rare disease patients eligible to take part, posing a difficulty for sound, scientific, statistically significant conclusions to be drawn.
This could be improved for the rare disease patient, by way of expert centers from around the globe collaborating together with their medical research.
The Eurordis European Reference Networks (ERNs) initiative supports this method of collaboration.
In my view, there is a best practice duty owed to the rare disease patient for medical research global collaboration.
To view my post 'Why Global Collaboration is so Important to the Raynaud's Scleroderma patient', Click here
During last year’s bi-annual World
Systemic Sclerosis congress, The Journal of Scleroderma and Related Disorders, (JSRD),
was launched.
This is a most welcome advancement for progress to the Scleroderma patient, whilst waiting for a much needed improvement in treatment options, and of course a cure.
This is a most welcome advancement for progress to the Scleroderma patient, whilst waiting for a much needed improvement in treatment options, and of course a cure.
I wrote about Volume 1 Number 1 and 'the importance of medical research to the Raynaud's Scleroderma patient' here, as well as, 'taking part in a clinical trial', here.
I discussed the contents of Volume 1 Number 2, here
On a personal level, it is unlikely that the discovery of the cure for Scleroderma will be of much assistance to me, since I am now living with the damage which the Scleroderma, when at its most aggressive and active, has caused.
However, this does not make me less
hungry for wanting to see this disease designated extinct with a
scleroderma-free-world being a reality.
It must also follow that the
newer, more innovative medications and treatments must be made available to the
rare disease patient immediately, in an attempt to achieve the rare disease
patients’ best outlook and outcome.
The importance of Expert Specialist Centers, Click here
To view the BSR and BHPR guidelines for Systemic Sclerosis treatment and management, Click here
An edited version of this article was published here, on the Rare Disease UK website.
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.
#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.
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.
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
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#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.
Last Update: Feb 2020.
The
Importance of an Early Diagnosis and Medical Research.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
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