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Debbie
King, Canada
Patient
Profiles DAY 9
June
Scleroderma Awareness Month 2017
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| DEBBIE KING, CANADA |
Name: Debbie King
Location: Vancouver,
Canada
Diagnosis: Systemic Scleroderma
I was
diagnosed around 2009/10.
What were your presenting symptoms?
Presenting
symptoms were my hands - the fingernails were sort of warped and shrinking if
that makes sense?!
My
original rheumatologist dismissed my self-made diagnosis of scleroderma with a
blunt – ‘don't be ridiculous you do not have scleroderma’. I no longer see him.
I
currently take prednisone, hydrochlorquine and I have just started injecting
methotrexate once a week.
What are your 3 biggest current challenges due to your diagnosis?
My biggest challenge by far is the digital ulcers - constantly getting infected, extremely painful, and flat out exhausting. I was doing ok until a nasty ulcer on my pinky finger showed up and I have a bone infection.
I had a
picc line put in last Tuesday. Today will be day 16 iv therapy. I am not super
happy about this, but the hope is to save my finger from being amputated.
Tips for
living for me, anyways are - be a warrior, cry when you have to, but do NOT
give in to this disease. I refuse to.
What are your 3 wishes for the future?
-
Find a
cure for this debilitating painful disease
-
Educate
those that know little about it
-
Just hang
in there
Life is
good, take time to rest when you need it.
Do not
ignore what your body is telling you!
Big thanks go to Debbie for sharing her scleroderma experience for scleroderma awareness month. Please include her finger in your thoughts and prayers. Thank You.
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
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
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
Big thanks go to Debbie for sharing her scleroderma experience for scleroderma awareness month. Please include her finger in your thoughts and prayers. Thank You.
To read more about why I chose ‘Patient Profiling and
Research’ as the focus of my 2017 campaign, Click here
Why Research and Patient Profiles? Scleroderma Awareness
Month 2017, Raynaud's, Rare Autoimmune Disease, Click here
INDEX to Scleroderma
Awareness 2016 Campaign, Click here
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
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 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.
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| 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. No wages or admin costs. Thank You.
#HOPE
Last Update: April 2018
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