DAY 30: The HealthCare
Dream Team
Scleroderma Awareness Month 2016,
Raynaud's, Autoimmune Rare Disease
DAY 30: Scleroderma Awareness Month 2016
The HealthCare
Dream Team
Scleroderma is a systemic disease that can
affect the entire body — the treatment of which requires a multidisciplinary
approach in medical care, best provided by an expert specialist centre.
As has been emphasized in most of my daily
awareness posts, an early diagnosis is crucial for best patient care in the
hope to prevent potential life threatening, irreversible damage.
In 1997, I was given a 15-month prognosis by my
original diagnosing Doctor. The following year, in December 1998, I went for a
second opinion to The Royal Free Hospital where I met and then subsequently,
became Prof. Dame Black’s patient and then Prof. Christopher Denton’s patient.
A multidisciplinary medical team will be
required to suit the individual patient’s need. I have included on the image
(above), the medical professional roles that are involved in my
ongoing care.
I am eternally grateful for the care and
medical expertise of the super human beings who are Prof. Black and Prof.
Denton, for keeping me alive with only minimal internal organ involvement.
Although I am no longer able to work in my
60-hour a week role as a barrister and my lifestyle has been forced to change,
I feel extremely blessed that I am able to combine my professional
qualifications and skills with my 19-year patient experience to further the
scleroderma and rare disease cause.
Living with a chronic, currently incurable
disease brings along huge challenges, in addition to managing the physical
symptoms.
A clinical psychologist can be extremely
helpful with addressing the life changes caused by scleroderma.
For me, the next best thing to there not being
a cure, is having the comfort in the knowledge, that I have the best medical
care team around me, contributing to my return to wellbeing.
My tonic to keep going is most definitely
influenced by the dedication and commitment which I see Prof. Denton show to
his patients and the scleroderma global community as a whole.
Therefore, as a gesture of gratitude to Prof.
Denton and the scleroderma unit at The Royal Free hospital, I started a Just
Giving page, which I am delighted to report has so far raised £627.76 to go
directly to Prof. Denton’s research fund.
As I highlighted in yesterday’s post for World
Scleroderma Day, never has been there a more exciting, promising time for
scleroderma patients than now.
The global medical community are working
together with their research trials, and pharmaceutical companies are
recognizing some of the unmet needs of the scleroderma patient, with more
chemical compounds being granted orphan drug status than ever before.
I very much hope that you have enjoyed this
month’s Scleroderma Awareness Month posts. I would like to thank all of the
global patients who commented and expressed their support in sharing awareness.
Read more, here.
Read more, here.
United together, we will crack the scleroderma
code. #SclerodermaFreeWorld.
An edited version of this article was published here, in my Column with Scleroderma News.
June 2016.
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
If we only had more RESEARCH investment for
Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, 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 is taking 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: RaynaudsSclerodermaAwarenessGlobalPatients
#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. Thank You.
#HOPE
Last Update: April 2018
