Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
Over here in the
northern hemisphere the summer holidays have finished. As scleroderma patients,
we know all too well, that we do not have a holiday from this diagnosis.
More often than not,
the management of the multi complex symptoms makes for a full time job.
I have previously, likened my experience to being an Olympic athlete.
I have previously, likened my experience to being an Olympic athlete.
However, this year,
I feel that my experience has been more like a circus performer, by way of
juggling the many demands which my disease brings.
Although the warmer
temperature during the summer months, 'The Magic of Summer', is
most welcome, a different set of symptoms present, with pain, fatigue and 'tin man' being a
constant.
The seasonal change from summer
to autumn always causes me to have a heavy heart, even though I try to not let
this seasonal reality sadden me.
I know that I will have to prepare for battening down my hatches, and a return to my eskimo-style outfits.
I know that I will have to prepare for battening down my hatches, and a return to my eskimo-style outfits.
This year, I have
been very fragile, having starting the year with shingles.
At the start of spring 2018, I wrote about the Pandora's Box and my skin cancer experience.
I also wrote about my ongoing dental issues due to my diagnosis, 'If we only had more research'.
At the start of spring 2018, I wrote about the Pandora's Box and my skin cancer experience.
I also wrote about my ongoing dental issues due to my diagnosis, 'If we only had more research'.
In this article I
will be focussing on the dental and oral implications which this diagnosis can
bring, and in particular, my recent dental visits.
Tightening
of the skin on the face, combined with shrinkage to
the soft tissue around the mouth and lips, causes thinning to the lips, with
deep lines around the mouth.
This
change in facial shape and appearance can cause multiple complications.
Including, tooth loss due to the recession of the gums and tooth root
reabsorption.
A dry mouth symptom can lead to mouth infections and tooth abscess.
A dry mouth symptom can lead to mouth infections and tooth abscess.
Mouth opening can be
very difficult, making a dentist appointment timely and requiring a patient,
understanding, scleroderma informed dentist.
I am extremely grateful to my dentist, Dr Andrew Booth, and dental
hygienist, Louise Doran for their continued patience and expertise.
I see Louise every three
months, combined with appointments with Andrew, every six months. However, this
schedule is often interrupted by way of an emergency appointment due to a flare
caused by an infection.
Day 28 Scleroderma Awareness Month 2016.
I have difficulty holding a tooth brush due to the physical limitation in my hands and fingers.
Over the years, I have developed gum recession.
This is excruciatingly painful, causing dental involvement requiring tooth extractions and increased susceptibility to infection, aided by a continual dry mouth.
This is excruciatingly painful, causing dental involvement requiring tooth extractions and increased susceptibility to infection, aided by a continual dry mouth.
I am devastated to have had 3 tooth extractions due to scleroderma.
However, on the bigger picture scale, I know that this is a small irrelevance, compared to some of the organ devastation which other patients experience.
However, on the bigger picture scale, I know that this is a small irrelevance, compared to some of the organ devastation which other patients experience.
Throughout this year, my gum recession has deteriorated. Last week,
during my appointment with Louise, I nearly passed out. I had pain shooting
across my face, along to my ear, caused by the exposure of my teeth roots, due
to gum recession.
After a few days recovery, Andrew, very kindly applied a sealant over
the exposed part of the teeth. So far, this has proved successful and I am
elated to be ‘face ache free’, caused by gum recession!
I am extremely
careful with the foods which I eat, choosing softer, easier to chew foods, as my
best option. The scleroderma tooth fairy is not having my two front teeth, or any more of my teeth!!
This very important symptom of scleroderma, dental / mouth involvement,
is most definitely a current unmet clinical need.
Several of the
patients included within my Scleroderma Awareness Month 2017 and 2018 campaigns, reported dental / gum symptoms, as one
of their many current health challenges. INDEX.
GUM RECESSION, TOOTH
EXTRACTS, Click here
SOFT TISSUE, ULCERS,
Click here
TELANGIECTASIA,
Click here
GASTROINTESTINAL,
Click here
Although these unmet needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life.
An investment in medical research will most certainly
improve the currently ‘soul destroying’ reality, these unmet clinical needs bring.
I am honored to be a
patient research ambassador with the National Institute for Health Research. video.
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.
In the meantime, I
continue to remind myself that 'My Job Today is to Simply Get Better', with the scleroderma tooth fairy away, on holiday.
Follow:
c
c
Facebook Page: Raynauds
Scleroderma Awareness Global Patients
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. No staff wages or admin. Thank You.
Coming Up: OCTOBER is RAYNAUD'S AWARENESS MONTH
Living the dream, scleroderma style.
An edited version of this article was published here, in my Column with Scleroderma News.
September 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
Coming Up: OCTOBER is RAYNAUD'S AWARENESS MONTH
Living the dream, scleroderma style.
An edited version of this article was published here, in my Column with Scleroderma News.
September 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
Skin Cancer and scleroderma, Click here
Unmet Medical Needs, Click here
Calcinosis Video, 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.
The Scleroderma Tooth Fairy.
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#RaynaudsFreeWorld
#SclerodermaFreeWorld
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