Scleroderma Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease.
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| DEBBIE KING, CANADA |
Name: Debbie King
Location: Vancouver, Canada
Diagnosis: Systemic Scleroderma
I was diagnosed around 2009/10.
Presenting symptoms?
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.
Current Medications:
Prednisone.
Hydrochlorquine.
I have just started injecting methotrexate once a week.
3 biggest challenges due to your diagnosis?
My biggest challenge by far is the digital ulcers.
They constantly getting infected, are 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.
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!
JUNE 2017.
2018
UPDATE:
My symptoms haven’t changed too much over the
years.
The biggest pain in the a** is the Raynaud’s
syndrome that affects the skin and nails on the fingers and toes, very painful.
My skin is very tight and I have the hands of a
90 year old, they are so wrinkled and funny looking.
But it could always be worse couldn’t it ? Lol.
I am still on the same meds:
5 mg prednisone daily.
200 mg hydrochlorquine.
2 tablets daily of oxycodone for pain.
RESEARCH
2018
I have never been in a trial and would I ? Yes
possibly, it would really depend on what was offered and what are the risks
that go along with it.
I notice a lot of trials are offered to
American residents and I am Canadian and have not seen too much offered.
If I ever do, I would certainly be interested
in what is offered, but also, I am a little sceptical.
IN BETWEEN MEDICAL APPOINTMENTS:
Big thanks go to Debbie for sharing her scleroderma
experience for Scleroderma Awareness Month.
Current Unmet Clinical Needs 2018:
CALCINOSIS, Click here
GUM RECESSION, TOOTH
EXTRACTS, Click here
SOFT TISSUE, ULCERS,
Click here
TELANGIECTASIA,
Click here
SCLERODACTYL HANDS,
Click here
INVISIBLE
DISABILITY, Click here
RAYNAUD'S, Click here
GASTROINTESTINAL,
Click here
 |
| Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo. |
'Scleroderma
Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here
Global Patient
Profiles Campaign Index, Click here
Importance of Medical
Research and Awareness Raising, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
Week 3, 2017 Patient
Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient
Profiles: Progress in Medical Research, Click here
Week 1, 2017 Patient
Profiles: Introduction to multi complex disease, Click here
Why I chose global
Patient Profiles for my 2017 / 2018 Campaign, Click here
2017 Global Patient
Profiles Campaign Introduction, Click here
'Being your own
awareness advocate', Click here
Scleroderma Awareness
Month Flashback 2017, Click here
Scleroderma Awareness
Month Flashback 2016, Click here
My 2016 Campaign, A
to Z: Scleroderma and Raynaud's diagnosis, Click here
2016 Campaign Video, Click
here
March 2018 Autoimmune
Disease Awareness Month, Click here
World Scleroderma Day
2017, 29th June, Click here
World Scleroderma Day
2016, 29th June. Origins of the date, Click 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 MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
To view the presentation, Click here
To view my article 'Why Global Collaboration is Important', Click here
All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as:
Early Diagnosis
Expert Specialist Centres
Access to innovative medicines
ALL being, crucial factors for best practice management and care.
To read my articles:
Raynaud's, Click here
This year, I am celebrating 20 years of being a
patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
 |
| Sept 2017 |
 |
| Prof Chris Denton and I, 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. Read more, here
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
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: June 2018
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