My
Scleroderma and Chemotherapy Experience. Nicola Whitehill.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
At the start of December, I will be celebrating my
20th year since first dragging my tin man body, to the Scleroderma
Unit at The Royal Free Hospital in London, UK.
 |
| Sept 2017 |
The
previous year, at the time of my initial diagnosis in
September 1997, I was told that I had a 15month prognosis, due to the
aggressive attack, which the diffuse form of the disease, was having on my
body.
I was
also told that there was no cure, with treatments targeting symptom suppression
in a ‘hope for the best’ kind of way. The treatments used being steroids,
chemotherapy and immunosuppressants.
During the
year following having first heard those life changing words ‘You have
scleroderma’, I took all of the standard treatments used, in an attempt to
suppress the disease activity.
These
medications included Hydroxychloroquin, Tacrolimus,
Cyclosporin, Methotrexate, Prednisolone, Omeprazole, ALL pain killers,
Amitryptiline, Gabapentin, and Co-proxamol still remains my painkiller of
choice.
By December 1998, I was in a very bad way. My body
was stiff, weak, in constant excruciating pain, and my skin was extremely tight.
I was then started on a new medication regime which
included 3 iv Cyclophosphamide infusions, along with
mycophenolate mofetil (MMF) tablets.
Thankfully, my name
was removed from the Stem Cell transplant waiting
list.
A daily dose of 2g
MMF for 5 years stabalised my symptoms. This was stopped in March 2004, upon my
achieving my personal career goal of being a practising barrister.
I am now 14 years chemotherapy
/ immunosuppressant free. I take Bosentan for my Raynaud’s and control my GI
symptoms with a strict Diet.
My
body is still very weak from the effects of the chemotherapy. I am
super mindful that I have a weakened immune system in the process of
repair. I avoid being in large crowds to try and not get sneezed or
coughed on.
Any
small bug or virus could knock me out for months. I already feel as
though I have continual flu due to my scleroderma lethargy!
Thankfully,
I no longer have the continual nausea which accompanied my chemotherapy
experience, however, my GI symptoms are a continual daily demand.
My
muscles are still very weak, feeling as though I have sprinted around
the world and constant exhaustion upon the most basic of tasks eg.
having a bath.
My hair is slowly becoming thicker, but still comes out en masse, and more silver coloured hairs!
In November
2016, I was delighted to hear Prof Chris Denton advise me that my skin is cured from
scleroderma.
I am
eternally grateful to Prof Chris Denton and the NHS for keeping me alive.
As well
as my other dream team members.
 |
| Dr Howell, Raynaud's world trailblazer |
 |
| Dr Sykes, Consultant Rheumatologist, Southport hospital |
My 'tin man' body, along with
chronic fatigue and mobility challenges, remain
constant sources of frustration, making a full time job, with
managing my symptoms.
This year in particular, has been quite challenging for me with my scleroderma 'added extra' complications such as skin cancer, dental issues, calcinosis and index finger ulcer.
Lucky, in that, I have minimal internal organ damage. Lucky, in that, I continue to survive.
Albeit, my full time job is looking after, and respecting my symptoms.
During the
course of my global patient profiles campaign for Scleroderma
Awareness Month 2017 and 2018, every
patient detailed how Raynaud’s and digital ulcers were a
continual problem to them. INDEX
Other unmet clinical needs, which
patients have in common include:
I am honored to be a
patient research ambassador
with the National Institute for Health Research. video. I have recently been added to their 'Hall of Fame' article .
Medical Research provides immense hope for #SclerodermaFreeWorld.
Overall, for optimum
patient care, 3 hallmarks preside:
medical ‘dream team’
(expert specialist as the clinical lead).
In the meantime, I
continue to remind myself that 'My Job Today is to Simply Get Better',
with hope, and my canine diva dream team, as my constant companions.
October was Raynaud's Awareness Month and my 50 shades of blue 'party
trick', time of year.
Recently, I was appointed a Patient Public Voice on the NHS England CRG for Specialised Dermatology.
I am delighted about this role, and I very much hope to be a valued voice.
I am delighted about this role, and I very much hope to be a valued voice.
This is in addition to my NHS England CRG Specialised Rheumatology role, and my roles with the European Medicines Agency.
Living the dream,
scleroderma style.
Follow:
Twitter: @SclerodermaRF @RaynaudsRf
#SclerodermaFreeWorld
#RaynaudsFreeWorld
Please DONATE to help fund medical research
at The Scleroderma Unit, The Royal Free Hospital, London.
November 2018.
Living the dream, scleroderma style.
An edited version of this article was published here, in my Column with Scleroderma News. November 2018.
To read my articles:
Raynaud's:
|
| The global Raynaud's trailblazer - Dr Howell and I, Sept 2017 |
To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
here
To read My ‘Invisible
Disability’ experience, Click here
Facebook Page: Raynauds Unit Royal Free Hospital
Twitter: @RaynaudsRf
SCLERODERMA:
This year, 2018, 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. 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
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
Global Patient
Profiles Campaign 2018 Index, Click here
Global Patient
Profiles Campaign 2018 Video, Click here
Importance of Medical
Research and Awareness Raising, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
Becoming a Patient Research Ambassador for the NIHR, 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 Scleroderma Awareness 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
RARE DISEASE DAY:
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2016 Rare Disease Day Patient Voice
2016 Rare Disease Day Patient Voice
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.
for the illumination of the rare disease patients’ plight.
Rare Disease Day 2018, Research - Taking Part in
Clinical Trials, Click here
Becoming a Patient Research Ambassador for the NIHR, 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
Becoming a Patient Research Ambassador for the NIHR, 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
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, Click here
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:
Where, investment in medical research is
crucial, to improve the day to day reality, as well as, the long term outlook
for the entire global scleroderma community.
Follow:
Facebook Page: Raynauds Scleroderma Awareness Global Patients
Twitter:
@SclerodermaRF @RaynaudsRf
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#IamScience
#SclerodermaFreeWorld #RaynaudsFreeWorld
December 2018.
December 2018.
My
Scleroderma and Chemotherapy Experience. Nicola Whitehill.
Scleroderma, Raynaud's, Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
