Scleroderma Awareness Month, JUNE 2018
Raynaud's, Autoimmune, Rare Disease
1st June is
the start of Scleroderma Awareness Month, with the 29th June being
World Scleroderma Day.
This is OUR opportunity to showcase the rare
disease, scleroderma, to the World. In the hope to raise awareness of this health
reality, in all of its guises.
Whether it be awareness for fundraising purposes
for investment in research, for that oh so desired cause and cure, or,
awareness, for education purposes.
This is OUR day to put the spotlight on the
rare disease which we live with, 365 days of the year, with no holiday break
from it. With hope and pain, as our constant companions.
2017 Flashback
2016 Flashback
Sadly, this Scleroderma Olympian did not make it to the Scleroderma Unit Family Day on the 19th May at the Royal Free Hospital, London.
As heart wrenching
as it was, I had to make the executive decision that I was not physically able
to attend this informative annual event. This is due to a combination of current
health issues, which would most certainly be exacerbated by the physical exertion
of a BIG day out.
My body is still
recovering from my shingles outbreak at Christmas, and remains in the ‘fragile
zone’. Along with the Pandora’s Box continuing to bring
unwelcome surprises.
My Raynaud’s
sensitivity keeps me under house arrest all year round. By staying at home, I
can attempt to minimise the number of daily attacks by maintaining a constant,
surrounding temperature.
The digital ulcer which appeared in March, on my right
index finger, still remains in situ, along with the continual, agonising pain.
Even after 20 years,
the reality of living with this ‘fun snatcher’ disease, continues
to be a constant symptom juggling, management challenge.
My diary is kept
busy with the multiple medical appointments.
For me, managing my symptoms, combined with fatigue, mobility challenges and my nutrition / diet regime is a full time job!
 |
| Michelle, Prof Denton, Debby (thanks to Michelle for the photo) |
I was very disappointed
to have missed Prof Chris Denton presenting a plaque to Debby, the late,
very brave, Kevin’s wife, and Michelle, their daughter.
Debby, her family, friend
Ryan and other friends, organised a charity golf day last summer.
An amazing total of
£2000 was donated for medical research at the Scleroderma Unit, The Royal Free
Hospital.
The plaque is to be
placed on the side of a specialised freezer unit used for medical research,
which the donation money helped to purchase.
Huge thanks and eternal
gratitude go to Debby and Ryan for such a kind and generous donation.
Due to the success
of the day, the event is to be held as an annual extravaganza, in Kevin’s
memory.
I had the pleasure
of meeting Kevin, at the Scleroderma Unit, several months prior to his passing.
We were at the medical imagery department, having photographic images taken of
our disease progression.
Seeing the tightness
of Kevin’s skin, took me back to my initial year of diagnosis, 1997.
I remember showing Kevin
that I could now outstretch my arms and my skin was slowly regaining its
elasticity.
We joked together that,
at least we now had a ‘claim to fame’, as Prof Chris Denton had requested the
images, with view for future use within a hardback educational book about
scleroderma.
This aspect of fellow
patients dying from their disease progression, is exceptionally heart breaking
and hard for me, to take in, and of course, my prayers are with their families.
However, I know that I am blessed to have made
it to my 21st year.
This super charges
my personal efforts in utilising my skills in the best way which I can to help achieve
the / my ultimate dream – a Scleroderma Free World.
The Awareness Month
of June, along with World Scleroderma Day, 29th June, are our golden
ticket / opportunities to making the ultimate dream, a reality – a Scleroderma
Free World.
This year, 2018, an
online Facebook event has been created for 29th June, World
Scleroderma Day by UK patient Lizzy.
Liz and I have shared
some of our creations which we have previously made for awareness purposes, or,
for fundraising monies / donations.
We hope to collect fellow
patient creation images, and combine them all together, making a video, similar to the global patients video.
Please get involved
and share your photos!
Living the dream,
scleroderma style.
Follow:
Facebook Page: Raynauds Scleroderma Awareness Global Patients
Twitter:
@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. No wages / admin costs.
An edited version of this article was published here, in my Column with Scleroderma News. May 2018.
An edited version of this article was published here, in my Column with Scleroderma News. May 2018.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, 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
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, Click here
Diet and nutrition, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
RARE DISEASE DAY:
Rare Disease Day 2018 – Research, Taking
Part in Clinical Trials. Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
2016 Rare Disease Day Patient Voice
2016 Rare Disease Day Patient Voice
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.
I
highlighted other areas of medical research interest within Week 3 of my Patient Profiles Campaign for Scleroderma Awareness Month 2017.
VIDEO
VIDEO
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:
Early Diagnosis
Expert Specialist Centres
Access to Innovative Medicines
Where MEDICAL RESEARCH investment
is VITAL.
Research
is the key. Abstracts from 2016 World Congress, Click here
The Family Day at the Scleroderma Unit, The Royal
Free Hospital took place on the 19th May 2018. Browse the
program, here
This year, I am celebrating 20 years of being a
patient at this world leading expert specialist research centre.
 |
| Sept 2017 |
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.
I am truly humbled and inspired by their work
ethic. 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
diagnosing doctor, that I was looking at a 15month prognosis.
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.
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: Raynauds Scleroderma Awareness Global Patients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#ADAM #Scleroderma
#Raynauds
#RareDisease
Living the dream, scleroderma style.
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.
#HOPE
Last Update: May 2018
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