‘Your skin cancer has
cleared’
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
For me, 2018 started with a
further scleroderma related, potentially life threatening, additional health
challenge.
The Bowen’s skin patch re-presented, on my left knee.
The Bowen’s skin patch re-presented, on my left knee.
Last summer, I recognised
the symptoms, and knowing that the medication Effudix cream had cleared the
Bowen’s patch previously, I went to see my GP, Dr Tim Irvine,
for a prescription for the cream, in August.
 |
| Aug 2017 outside my GP practice - Cumberland Surgery |
Due to the type of
medication, in that Effudix is a chemotherapy cream, Dr Irvine was unable to
prescribe it to me, and had to refer me to the local dermatology centre.
Previously, I would attend dermatology appointments at the Southport and Ormskirk hospital.
Previously, I would attend dermatology appointments at the Southport and Ormskirk hospital.
However, I was now required
to attend a local clinic, with another dermatology team.
At the initial referral appointment in January, Dr Bassas, the Doctor, 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.
At the initial referral appointment in January, Dr Bassas, the Doctor, 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 agreed to a biopsy at the
following appointment, in the event that the skin patch had not cleared with
Effudix. I was grateful for Dr Bassas’ expertise and confirmed that I had
consented to not having a skin biopsy, against his professional judgment.
I detailed more about the
January appointment, in my article ‘The Pandora’s Box of Scleroderma’.
I then commenced daily
application of the Effudix cream until a week before my follow up appointment,
last week. Prior to attending this appointment, as the date came nearer, I was
becoming increasingly more anxious.
The Effudix cream had caused my skin to inflame and break, bringing pain, and causing discomfort.
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, the skin
still remained discoloured, but was now smooth.
I was however, anxious, as I knew that I was seeing a different doctor. I was not sure if I was going to have to succumb to the surgical knife, further to his medical expert view.
I was however, anxious, as I knew that I was seeing a different doctor. I was not sure if I was going to have to succumb to the surgical knife, further to his medical expert view.
It had also been playing on
my mind that my 20 years experience of living with this diagnostic reality, had
maybe, made me complacent with being told ‘this could kill you’.
After all, in 1997, I was
given a 15 month prognosis at the time of my initial diagnosis. And then in December 2016, I remain in a state of elation, having
been told by Prof Chris Denton that ‘my skin is cured from scleroderma’.
The feelings which I had in
preparation of the follow up appointment were more than abated, by the end of the
consultation, thankfully.
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.
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.
Dr Downs reminded me that
the medications used to treat scleroderma, carry a potential increased risk of
developing skin cancer combined with sun damage.
I very much enjoyed the
dermatology scleroderma related discussion which I had with Dr Downs. He
totally blew me away with his medical knowledge.
I hope that I provoked a similar reaction to Dr Downs, when I told him that I was now 14 years immunosuppressant free, other than bosentan for my Raynaud’s. He did look impressed / astounded!
I hope that I provoked a similar reaction to Dr Downs, when I told him that I was now 14 years immunosuppressant free, other than bosentan for my Raynaud’s. He did look impressed / astounded!
Being a long term survivor
of the rare autoimmune disease scleroderma and Raynaud’s, in my experience, it
is a most welcome, albeit, fairly uncommon occurrence to receive any positive
medical progress, review.
However, I remain in a state of elation that my body is now free from the ‘additional extra’, Bowen’s disease, and that my ‘skin cancer has now cleared’.
However, I remain in a state of elation that my body is now free from the ‘additional extra’, Bowen’s disease, and that my ‘skin cancer has now cleared’.
I know that I am a ‘lucky’
scleroderma patient. Lucky, in that, I have minimal internal organ damage. Lucky,
in that, I continue to survive.
 |
| Sept 2017 |
Albeit, my full time job is looking after, and respecting my symptoms.
As well as, reminding myself that ‘my job today is to simply get better’.
As well as, reminding myself that ‘my job today is to simply get better’.
Medical Research provides immense hope for #SclerodermaFreeWorld, in the meantime. I
am delighted to be a Patient Research Ambassador.
This month, March,
is Autoimmune Disease Awareness Month. I have been reposting the global patient profiles with a focus on medical research areas current unmet needs.
My personal unmet needs.
My personal unmet needs.
In memory of his Dad, and to raise vital funds, Ben
Milan is holding a charity boxing night on 15th March 2018.
 |
| RIP Chris Milan 10/6/59 - 4/3/17 |
All monies will be shared and donated to
the Scleroderma Unit and Children with Cancer.
To take part in the online auction.
DONATE to Ben's Just Giving Page.
To take part in the online auction.
DONATE to Ben's Just Giving Page.
Wishing Ben the best of luck for a
fantastic event, which Prof Chris Denton will be attending. So, not just the
boxing, to look forward to seeing!
£3183.92 has been raised so far - Very Well Done, Ben, and, Thank You. DONATE
2020 UPDATE on the amazing fundraising achievements by the Milan family.
Eternal gratitude to them, in memory of the very much missed Chris.
£3183.92 has been raised so far - Very Well Done, Ben, and, Thank You. DONATE
2020 UPDATE on the amazing fundraising achievements by the Milan family.
Eternal gratitude to them, in memory of the very much missed Chris.
Please DONATE to help
fund medical research at The Scleroderma Unit,The Royal Free Hospital, London.
ALL of your money will be
used for medical research purposes only. Thank You.
Living the dream, Scleroderma Style.
Living the dream, Scleroderma Style.
#SclerodermaFreeWorld
#RaynaudsFreeWorld
An edited version of this article was published here, in my Column with Scleroderma News. March 2018.
Planning for the Future, Click here
Rare Disease Day 2019: Leaving a Legacy Gift, Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
An edited version of this article was published here, in my Column with Scleroderma News. March 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.
‘Your skin cancer has
cleared’
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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