Taking part in Raynaud's Scleroderma Research Trials,
Scleroderma, Raynaud's, Autoimmune Rare Disease.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
The theme for this year’s Rare
Disease Day 2016 was ‘Research, where all possibilities are Limitless’.
This is particularly relevant to the rare disease patient whose daily reality is governed by a poorly understood medical condition, where treatments are targeted at symptom suppression, with little known understanding to cause and cure.
And, of course, to have actually attained a diagnosis, is an accomplishment in itself, since on average this takes 4 years.
This is particularly relevant to the rare disease patient whose daily reality is governed by a poorly understood medical condition, where treatments are targeted at symptom suppression, with little known understanding to cause and cure.
And, of course, to have actually attained a diagnosis, is an accomplishment in itself, since on average this takes 4 years.
I wrote about the importance of expert specialist centres, here
I wrote about the importance of an early diagnosis, here
I wrote about the importance of an early diagnosis, here
In 1997, aged 24, having
developed swollen fingers and joints, a specialised blood test confirmed that I
had the rare, autoimmune rheumatic disease known as Scleroderma (Systemic
Sclerosis) along with the circulatory disease, Raynaud’s.
I was given a 15month prognosis by my diagnosing doctor, as, there is no cure, and still, there remains no cure.
I was given a 15month prognosis by my diagnosing doctor, as, there is no cure, and still, there remains no cure.
I was prescribed a cocktail of
chemotherapy and immunosuppressive drugs, which eventually slowed the
Scleroderma progression.
I am now 13 years free from this regime, with just taking a daily tablet to open my blood vessels and remain indoors at much as possible, to prevent Raynauds attacks.
I am now 13 years free from this regime, with just taking a daily tablet to open my blood vessels and remain indoors at much as possible, to prevent Raynauds attacks.
TAKING PART IN RESEARCH
Throughout my 20 year
Scleroderma patient experience, I have taken part in several clinical trials,
all based at the expert Scleroderma Unit at The Royal Free Hospital in London,
with Prof Chris Denton being the clinical lead.
It is 2 years since my last
clinical trial experience, where, over the course of 6months I had to take
‘mystery tablets’ at set times, communicated to me via an electronic bleeper,
which I was unable to turn off!
WHAT CAN I EXPECT?
At the start and end of any
clinical trial, all baseline measurements must be taken, so that any difference
in results can be seen.
This required me to have to travel to the Scleroderma Unit in London.
I was able to remain at home in Southport for the trial duration, with the lovely Yvonne, the clinical trial nurse, staying in regular phone contact with me, for that time.
This required me to have to travel to the Scleroderma Unit in London.
I was able to remain at home in Southport for the trial duration, with the lovely Yvonne, the clinical trial nurse, staying in regular phone contact with me, for that time.
On this particular trial, I am sure that
my ‘mystery tablets’ were the live active ingredient, since I experienced some
quite unpleasant side effects, which I noted for the study purposes. I was
quite relieved when that trial finished.
My clinical trial experience
prior to the ‘mystery tablets’ involved me having to inject myself with a
‘mystery liquid’.
Having a rare disease certainly takes you down life paths which you would never have dreamed of going, as well as, makes you find inner strength, which you never knew you had.
I have always hated needles, and still do, I can not even watch the phlebotomist put the needle into my arm at my current bi-monthly blood tests.
Having a rare disease certainly takes you down life paths which you would never have dreamed of going, as well as, makes you find inner strength, which you never knew you had.
I have always hated needles, and still do, I can not even watch the phlebotomist put the needle into my arm at my current bi-monthly blood tests.
However, for the best part of 18months
‘Trainspotting’ came to my house here, in Southport.
I was required to inject myself with a liquid which was stored in a small vial, which I had just removed from the freezer.
I had several minutes to warm the vial, so that the frozen ingredient became a liquid, draw the liquid into the needle and then inject myself, twice a week, including Christmas Day 2008.
I used my stomach as my injection site, giving myself the reward of cake, to keep my injection site maintained properly.
I would also play my favourite music at that time, to get me in to ‘the zone’ for doing what I needed to get on and do.
I was required to inject myself with a liquid which was stored in a small vial, which I had just removed from the freezer.
I had several minutes to warm the vial, so that the frozen ingredient became a liquid, draw the liquid into the needle and then inject myself, twice a week, including Christmas Day 2008.
I used my stomach as my injection site, giving myself the reward of cake, to keep my injection site maintained properly.
I would also play my favourite music at that time, to get me in to ‘the zone’ for doing what I needed to get on and do.
I have the utmost respect for
all patients who have to inject themselves on a daily basis. The ‘mystery liquid’,
although my worst nightmare to administer, made me feel a lot better, with less
pain and muscle rigidity.
Sadly, I understand that the results were not promising enough for the pharmaceutical company to consider further investment in this area, which is disappointing to me as a patient, as I did feel a lot better when having the ‘mystery liquid’.
Sadly, I understand that the results were not promising enough for the pharmaceutical company to consider further investment in this area, which is disappointing to me as a patient, as I did feel a lot better when having the ‘mystery liquid’.
I would urge every rare
disease patient to take part in a research trial if the opportunity presents,
by a respected research centre.
I wrote about the role of medical research, here
I wrote about the role of medical research, here
I discussed the Journal of Scleroderma and Related Disorders, here
As a rare disease patient, this (taking part in trials), is a way in which we can help to pioneer the future for fellow rare disease patients.
As well as, by taking part in a trial there is the opportunity to try newer innovative treatments which may provide most welcome symptom relief.
As a rare disease patient, this (taking part in trials), is a way in which we can help to pioneer the future for fellow rare disease patients.
As well as, by taking part in a trial there is the opportunity to try newer innovative treatments which may provide most welcome symptom relief.
Raremark website here
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.
Taking part in Raynaud's Scleroderma Research Trials,
Scleroderma, Raynaud's, Autoimmune Rare Disease.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
Hi,
ReplyDeleteWell done Nichola, you are an amazing lady. Immune diseases seem to be on the increase. I is quite strong in my family. I have raynauds & am currently being monitored for potential Lupus as the bloods were variable & inconclusive. One of my cousins have raynauds too & is being investigated following serious weight loss and stiffness. My son also has an autoimmune disorder, Vasculitis, he has been very ill at times & has had ops due to the disease but like yourself he fights every step of the way. I live with worry whilst he lives with what life has thrown him. He is brave & admirable like yourself.He is 27 yrs old now & injects him self weekly with a Chemo drug in order to fight relapses.
One of the things he struggles with is from the outside he looks so well but when hes off work sick people cant understand the invisible symptoms, pain exhaustion & worse during flare ups.
I am interested in genetic links to immune disease, have you come across any articles, as we have a few family members with various immune issues? Anything you can send to read I would much appreciate it.
All the best, Kate x
Hi Nichola - thank you for your articles. You are lucky on so many levels. Mainly? I envy you in that you are lucky enough to be able to communicate your experiences eloquently in a professional manner publishable. Also, through your experiences you gain wisdom (as I) and able to pass that on. I would love to be able to articulate my experience with Scleroderma and from the perspective as a black woman am in more heightened fear of things escalating to death because Scleroderma affects any people of colour more severely and rapidly. This also tails into "trials". The fear of going on a trial to help future prognosis is fraught with fear. The anonymous medicine perhaps making one worse and the doctors find it extremely difficult to help black people from the outset - fumbling in the dark - let alone trials medicine having the potential to make one feel better/worse appears a bit of a self sacrifice for black people fearing moving to an early grave - catch 22. It just worries me that where it is extremely difficult for doctors to better understand our white cousins compatriots, it just seems no man's land and a fait accompli doctors trying to bring someone of colour back from the brink of death that this disease can take them from relatively coping to it's all gone tits up with the trial medicine. What are we to do - can be a lonely scary place and no assurances in any shape or form. When I see my doctor, I sometimes feel they are just prescribing protocol with the though it's touch and go whether it works for you (as a black person) as I hear the words all the time "I don't know!!!". Sometimes, this is when I feel being black the medical system has not given near enough equal research our way. This is why predisease I hated going to the doctors because so many times they would say "it's hard to see on your type of skin or I can't see anything" - when for me I could clearly see things! It can mean "game over" if you are black and diagnosed with an autoimmune disease. Thankfully, I feel someone is looking out for me, because as a black woman, I am doing extremely well and coming up to my third year. This I know is partly due to always being active once and researching the disease when I was coming to terms with the diagnosis and realised from the outset that diet and the right type of supplements help in lessening the severity - it worked, within months my rheumatic pains disappeared still to-date and my other symptoms became less by the second (figure of speech). Although I think I've had the disease much longer before diagnosis but didn't go to the doctors because I was certain they wouldn't see the thickening of skin located to just both my wrists at the time. However, in all that said, you are doing a great job highlighting and bringing Scleroderma to the public forefront which benefits everyone. I'm happy for any parts of what I've written wants to be used.
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