Christine
Wilson, UK
Patient
Profiles DAY 19
June
Scleroderma Awareness Month 2017
Name:
Christine Wilson
Location: King’s
Lynn, Norfolk, England, UK
Diagnosis:
Year of
diagnosis: April 29th 2007
Age at
diagnosis: 54
Where / who
diagnosed you?
Mr David Williams
clinic, by a lady who was working for him.
Queen Elizabeth
Hospital, King’s Lynn
What were your
presenting symptoms?
I was working, and
then went off sick with Rheumatoid arthritis symptoms, as a carer I
knew what Rheumatoid symptoms were like.
But I had cold white
fingers.
So I made a list - Swollen feet and hands, bit of pain, fever,
tiredness, unwell.
I thought my
calcinocis was a chillblain.
How long did it take
for you to be diagnosed after first symptoms?
I got the Rheumatoid
bit right, but have an overlap. That day, I had x rays on my chest, hands and
feet. I was then referred to OT.
The pain in my feet
means I use a wheelchair if my husband needs to take me shopping.
I went off sick Feb
2007, when I could not grip with my hands plus they were white. My feet at the
end of shifts, were a nightmare, plus my knees swelled.
I asked to be
referred in Dec 06 but my symptoms were not that bad. I had to wait 4
months with my GP trying to move my appointment forward.
I was then
diagnosed in June 2007 with Rheumatoid Arthritis overlap with scleroderma
and Raynaud’s.
Current reality:
2017
I have coped by
going on methotrexate, which works wonderful.
Swimming,
keeping walking, keeping active, plus fully retired since 2006.
In this time, I have
had skin problems, one digital ulcer and reflux problems, and MRSA.
10 years on, I have
big problems with Sjogren’s which might be primary.
I also have big
problems with my mouth and teeth.
My skin is tighter
and I have developed Meniere’s disease (affects the inner ear).
What are your 3
biggest current challenges due to your diagnosis?
Walking slowed,
everything has slowed down
Cataracts
Lots of hospital
appointments, including dental
What are your 3 top
tips for living with your diagnosis?
If you can keep
going, live life to full
What are your 3
wishes for the future?
I wish the
scleroderma would just halt, so I can reach old age nicely.
Huge thanks go to
Christine for sharing her scleroderma reality and experience for scleroderma
awareness month.
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.
 |
| 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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