The Few Highs and Many Lows
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
Those life changing words ‘you
have scleroderma’ followed with ‘and Raynaud’s phenomenon’ are often met with
relief, paradoxically, due to finally having an explanation as to what is
happening to your body.
And then, within seconds, the reality hits in, of what those words actually mean and what will the future entail.
And then, within seconds, the reality hits in, of what those words actually mean and what will the future entail.
Living with a rare disease
where there is currently no cure and limited understanding as to causation,
most certainly presents many challenges, not just with symptom management, but
life style changes also, making for no two days to be exactly the same, due to
the multi complexity of the disease.
This also makes for no two
patients to display the exact same set of symptoms, adding to a timely
diagnosis and ultimately, the disease management process.
My recent patient profile
research campaign for scleroderma awareness month 2017, INDEX, highlighted the necessity for an early diagnosis, along with expert specialist centres for best patient management and care, with
access to advanced innovative medicines.
The patients who kindly took
part in my campaign all described their day to day reality being dominated by
their disease management.
I have described my full time job with my symptom management previously.
I have described my full time job with my symptom management previously.
The
highs
#SclerodermaFreeWorld
#SclerodermaAwareness #iamscleroderma
I am extremely grateful to
those patients who agreed to share their disease process reality for
scleroderma awareness month.
I had not prepared myself for the emotional roller coaster which the campaign provoked within me, whilst being reminded of those, my, ‘initial years’, when compiling each patient’s daily reality.
I had not prepared myself for the emotional roller coaster which the campaign provoked within me, whilst being reminded of those, my, ‘initial years’, when compiling each patient’s daily reality.
However, I was encouraged that
my Sjorgren’s symptoms were abated for this time. Especially, as I thought that
I was all cried out from the decades of living with the scleroderma and
Raynaud’s fun snatcher / body hijacker.
So, although the campaign
pulled on my heart strings, I very much enjoyed the interaction with my fellow
patients from all over the world, and remain extremely humbled by their
personal strength, tenacity and bravery with how they manage their
disease.
Wyatt the Warrior was the brave scleroderma patient who featured
on World Scleroderma Day 29th June. Candace, Wyatt’s mom, has
recently put together a scleroderma awareness video combining with #iamscleroderma.
If you would like to be included please visit the Facebook page and post your photo which can then be uploaded into the video.
If you would like to be included please visit the Facebook page and post your photo which can then be uploaded into the video.
Here is my photo.
This video shows to the world
as to the amazingly supportive and proactive scleroderma global community we
are.
Our global community is most
definitely one of my few high points of being on the scleroderma ‘not-so-fun
bus’.
Huge thanks go to Candace for
all that she does with her efforts for scleroderma awareness. As well as, huge
thanks to the Sclero Sisters, Aly and Sheryl, and of
course Sharon Esposito for sharing her wonderful creativity for scleroderma
awareness.
Flashback 2017
 |
| Wyatt the Warrior and his family |
Flashback 2017
I give further detail about my
scleroderma and Raynaud’s highlights in DAY 12 of the patient profile
campaign.
The
Lows
Sadly, my word limit for this
article will not allow me to fully document the ‘more so’ challenging aspects
to living with this rare disease.
Many patients included in the
patient profile campaign highlighted not just the disease symptom suppression
being difficult, but also the psychological aspect, and the effect of the
diagnosis on family members and friends.
I have shared some of my
personal strategy coping mechanisms via my cosmicfairy444 blog and Facebook page.
However, sadly, the harsh
reality of living with this diagnosis, means that you lose fellow patients, who
have become dear friends, to the disease.
This happened to me recently,
and it has taken me a few weeks to write about my lovely Australian friend
Silvana Vidmar, who died on the 22nd
July 2017.
 |
| RIP Silvana 14/12/1965 - 22/7/2017 |
I have mentioned Silvana
before, in several of my articles, as we used to make a special concerted
effort to contact each other on the Winter and Summer Solstice.
Sadly, Silvana was not well
enough to take part in the patient profiles research campaign 2017. Silvana
will always hold a special place in my heart. RIP.
Silvana
Vidmar
14.12.1965
– 22.07.2017
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
#RareDisease #Hope #Belief
Follow Raynauds Scleroderma Awareness Global Patients Facebook Page for latest updates
An edited version of this article was published here, in my Column with Scleroderma News.
September 2017.
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 Few Highs and Many Lows
Scleroderma, Raynaud's,
Autoimmune Rare Disease.
#SclerodermaFreeWorld #RaynaudsFreeWorld
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