The Pandora’s Box:
Scleroderma, Skin Cancer, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
Living with a rare disease where the cure and cause are unknown, is
daunting in every way imaginable.
For me, managing my symptoms, combined with fatigue, mobility challenges and my diet nutrition / diet regime ingredients is a full time job!
For me, managing my symptoms, combined with fatigue, mobility challenges and my diet nutrition / diet regime ingredients is a full time job!
I know that I am blessed to have made it to my 20th year
anniversary of living with scleroderma and Raynaud’s.
I very much liken the experience to being a Scleroderma Olympian. My gold medal being a day,
whereby, my many debilitating symptoms are kept at a tolerable level.
My ultimate gold medal is to still be around for when the cause and cure
are discovered, #SclerodermaFreeWorld, and although, this may not be of direct
benefit to my body as such, my soul will be more than plenished!
Even after 20years of having had my body hijacked, the multi complexity
of this disease and its consequences, never fails to surprise me, and sadly,
not in a good way. As to what, it is going to present with, next.
2018 has already kept me occupied with attending medical appointments,
whilst recovering from shingles and PTSD. The only medication which I take is
bosentan, and so, I have to have routine bi monthly blood tests. I go to my
local NHS England hospital, in Southport, for this essential follow up care.
 |
| Aug 2017 |
I managed to ‘wing’ not being subjected to any invasive skin tests until 2016, where
thankfully, the skin removed from my forehead was ok.
Skin cancer is a genuine and most
serious concern for the scleroderma patient.
An article highlighting such, is
published within the current copy of the Journal of Scleroderma and RelatedDisorders.
This
article concludes that the RNA polymerase subtype, shows to be more susceptible
to cancer induced autoimmunity. Yipeee… that’s me!
In 2016 I was delighted to hear Prof Chris Denton advise me that my ‘Skin is now cured from scleroderma’
I am sure that my 2g daily dose of mycophenolate mofetil, during the
years 1999 – 2004, reduced my skin symptoms of thickening, tightness and itch.
However, around 2013 I developed a red raised skin patch on the side of
my left knee. This was identified by Dr Cate Orteau at the Scleroderma Unit, as
Bowen’s disease and was successfully treated with Efudix cream.
Unfortunately, last summer the red skin patch returned, prompting me to
see my GP, Dr Irvine, who referred me to my local dermatology clinic.
 |
| Cumberland Surgery, Aug 2017 |
After examination, Dr Bassas advised a biopsy, to rule out any melanoma.
I was gripped by a fear of panic when thinking of my scleroderma patient
logistics, surrounding the whole biopsy procedure.
Namely, my slow wound
healing skin, along with, my current fragile health condition, combined with
the time of year over here in the UK. It is winter, my nemesis season.
This combination,
therefore, increasing the likelihood of any possible infection and the
antibiotic abyss, which would follow.
After some discussion, with me outlining my ‘special need’ concerns, Dr Bassas prescribed Efudix cream, with a follow up examination in 8 weeks. At which, if he were still of the view that a biopsy would be necessary, I promised that I would be an obedient patient!
After some discussion, with me outlining my ‘special need’ concerns, Dr Bassas prescribed Efudix cream, with a follow up examination in 8 weeks. At which, if he were still of the view that a biopsy would be necessary, I promised that I would be an obedient patient!
I saved Dr Bassas from the ‘chore’ / pleasure of having a selfie taken
with me, as I was not wearing my official ‘HOPE’ t shirt! Replacing it with my
compulsory winter ‘eskimo’ look.
 |
| Dec 2016, Royal Free Hospital |
This return of my Bowen’s disease skin patch is all part of the
Pandora’s box which encompasses this multi complex rare disease. Where, medical
research is our hope to achieve that ultimate gold medal for the
scleroderma rare disease community.
2017 Rare Disease Day unmet clinical needs to the scleroderma patient
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.
Living the dream, scleroderma style.
Please DONATE to help fund medical research at
The Scleroderma Unit,The Royal Free Hospital, London where 100% of all of your monies will be used for
medical research purposes only. Thank You.
#SclerodermaFreeWorld #RaynaudsFreeWorld
An edited version of this article was published here, in my Column with Scleroderma News.
January 2018.
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.
The Pandora’s Box:
Scleroderma, Skin Cancer, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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