Christine
Wilson, UK.
Scleroderma Awareness Month 2018.
Raynaud's, Autoimmune Rare Disease.
Name: Christine Wilson
Location: King’s Lynn, Norfolk, England,
UK
Diagnosis: Rheumatoid
Arthritis overlap with scleroderma and Raynaud’s.
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 I 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.
2017 reality:
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.
June 2017.
June 2017.
2018 UPDATE:
Diagnosis:
Pulmonary arterial hypertension associated with connective tissue
disease.
Connective tissue overlap syndrome.
Rheumatoid arthritis.
Systemic sclerosis.
Hyperthyroid eye disease.
Raynaud’s.
Hypertension.
Hyperchosterolaima.
Degenerative lumber spine stenosis.
Iron deficiency.
SYMPTOMS:
Dry eye mouth - Sjogrens.
Stiff clicky wrists.
Breathless.
Teeth loose - lots dental work. Food gets stuck. Finding it hard to eat.
Stiff feet.
Mild squamous dysplasia of the mouth.
Low iron sometimes tiredness.
Bowel leakage (weakness).
MEDICATIONS:
Amitriptyline, Betahistine, Ferrous sulphate, Hydroxchoraquine, Folic
acid, Calchew d3, Lansprazole, Simvastatin, Macictentan, Sildenafil, Levothyroxine
eye drops, mouth wash.
RESEARCH 2018:
I did a Raynaud’s trial with my son in Pontypool University. I travelled
200 miles but my son, Jamie, lives in Wales.
The trial was about gloves. Jamie came with me. The scientist / Doctor, compared
Jamie with me. It was about how long it took to warm up. The results were to
help medical understanding and how to make gloves for patients.
I think really, that it didn't go well. They filmed a Raynaud’s attack,
also. I came in from the cold, and had an attack.
I have also, taken part in a few research questionnaires on line. One of
which, was about well being.
I would like to take part in more research but I have asked, and nothing
came of it. I think that it was forgotten.
I am unusual, so really, I should be asked to take part, plus I would
recommend, for patients to take part in research.
IN BETWEEN MEDICAL APPOINTMENTS:
I am kept busy with: housework, garden, coffee with friends.
Holidays - anything of interest. Keeping warm.
How am I feeling? Well- Like an old 65 year old. I am fed up with my
mouth and teeth.
I have had to give up swimming and driving because of my Meniers symptom
of getting dizzy. Otherwise, I live life as full as I can.
Dog walking looking after my dog, Poppy. Dear little thing, came to us
in January to live rest of her life at my house. She was my sister in law's dog,
but she had to give her up. A hard decision, but the right one.
Huge thanks go to Christine for sharing her
scleroderma reality and experience for Scleroderma Awareness Month.
To read my articles:
Current Unmet Clinical Needs 2018, Click here
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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