Scleroderma
Skin Cancer and Other Skin Complications
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
At the time of my diffuse scleroderma (dcSSc) diagnosis
in 1997, I presented with extremely tight skin across my chest, arms, hands,
face, legs … all over my body.
My hands and fingers were puffy with tight,
itchy, shiny skin and painful joints.
I was unable to make a fist and could not
remove bottle tops, the lids of jam jars, or the like, and had other
symptoms (joint pain, gastro-intestinal, pain, lethargy, fatigue... Day 4 Scleroderma Awareness 2016).
Surprisingly, my Raynaud's symptoms developed later.
Surprisingly, my Raynaud's symptoms developed later.
I was
given a 15 month prognosis at the time of my initial diagnosis, due to the aggressive progression which the disease was having on my body.
However, further to 7 years of chemotherapy and immunosuppressants, (I am now 14 years cytotoxic drug free), I still remain in a state of elation, having
been told by Prof Chris Denton that ‘my skin is cured from scleroderma’, in November 2016.
 |
| Global Scleroderma Trailblazer Prof Denton and I, Sept 2017. |
I have a daily symptom management routine that includes bathing and moisturising my skin.
For the bath, I use liquid petroleum (Oilatum Plus) and then, after towel drying, I use Hydromol emollient cream all over my body.
Over the course of the last 5 years or so, I have experienced several skin complications which remain on-going.
Most recently, I attended a follow up of my appointment for my 'Bowen's patch' saga, which reignited at the start of 2018. ‘The Pandora’s Box of Scleroderma’.
At that initial referral
appointment in January, Dr Bassas, was most concerned to rule out a potential melanoma, advising me that
this could kill me.
I refused to undergo a skin biopsy due to the time of year, as winter is my nemesis season.
I refused to undergo a skin biopsy due to the time of year, as winter is my nemesis season.
I commenced daily
application of Effudix cream, a chemotherapy, until a week before my follow up appointment,
in March.
The Effudix cream had caused my skin to inflame and break, bringing pain, and causing discomfort. However, these symptoms subsided after a few weeks.
The Effudix cream had caused my skin to inflame and break, bringing pain, and causing discomfort. However, these symptoms subsided after a few weeks.
On the day of my follow up appointment in March, the skin
still remained discoloured, but was now smooth.
Dr Anthony Downs examined the discoloured skin area on my knee and told me
‘Your skin cancer has cleared’.
I was stunned and overjoyed, and what’s more – no biopsy!
I then showed Dr Downs other skin ‘spots’ for him to confirm that
these were sun spots, as well as, Actinic Keratosis, on my forehead. I was stunned and overjoyed, and what’s more – no biopsy!
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| Post biopsy Sept 2016 |
Dr Downs reminded me that
the medications used to treat scleroderma, carry a potential increased risk of
developing skin cancer combined with sun damage.
During my recent follow up appointment, Dr Aamir Meman, was concerned that the 'Bowen's patch' skin area was now presenting as a basal cell carcinoma.
As, the skin is now showing pinky brown patches. I have some new cream to try - Imiquimod, another chemotherapy cream.
Lucky, in that, I have minimal internal organ damage. Lucky, in that, I continue to survive.
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
- Calcinosis
- Gum recession
- Soft tissue and ulcers
- Telangiectasia
- Sclerodactyl hands
- Raynaud’s
- Gastrointestinal issues
I am honored to be a
patient research ambassador
with the National Institute for Health Research. video.
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.
Recently, I was appointed a Patient Public Voice on the NHS England CRG for Specialised Dermatology.
I am delighted about this role, and 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.
I am delighted about this role, and 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.
Follow:
Twitter, Instagram, Blogger, You Tube: @SclerodermaRF @RaynaudsRf
#SclerodermaFreeWorld
#RaynaudsFreeWorld
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. Thank You.
October 2018.
Living the dream, scleroderma style.
An edited version of this article was published here, in my Column with Scleroderma News. November 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.
#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.
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
Twitter, Instagram, Blogger, YouTube, Facebook Page:
#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.
Scleroderma
Skin Cancer and Other Skin Complications
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
