Dr Libby
Wilson and Primary Raynaud's.
Raynaud’s
Awareness Month, October 2018.
Scleroderma, Autoimmune Rare Disease.
WehOOOoo, TODAY, is Libby's birthday.
Here is our 2018 photo update:
Libby is without
doubt, an ExtraOrdinary human being.
Not only within her professional career,
but, Libby is also, an exceptional friend. Whose continued support and
kindness, during the last 34 years, I am eternally grateful for.
Wishing
you a fairy Happy Birthday, Libby, Living the dream!
2017:
Primary Raynaud's – Dr Libby Wilson.
Raynaud’s Awareness Month, October 2017.
Scleroderma, Autoimmune Rare Disease.
Libby is a Consultant in Emergency Medicine at Aintree University NHS Hospital, Liverpool.
Her Raynaud’s symptoms present in her hands and
feet only.
Libby’s hands and feet will turn white in
colour, and, are extremely painful upon rewarming, upon the blood returning.
Libby’s Raynaud’s symptoms will be brought
about should the temperature be 10 degrees Celsius, or below.
Whereby, she will wear gloves and thick socks to help prevent a Raynaud’s attack.
Whereby, she will wear gloves and thick socks to help prevent a Raynaud’s attack.
Libby says:
‘Even the chiller cabinets in the supermarket
can be sufficient to turn my hands white and prompt a Raynaud’s episode.’
Libby is not taking any medication for her
symptoms and has no other underlying diagnosis.
I am particularly honoured to include Libby in
my 2017 campaign for Raynaud’s Awareness Month, as, not only have I been blessed
with her friendship for 33 years, ‘my oldest friend’, but, TODAY is her 45th
birthday.
This photo was taken on my 44th
birthday in June, a day which I am extremely grateful to Libby for, for making
so special.
Although, clearly, I am sorry that Libby also
experiences Raynaud’s, and the excruciating pain which accompanies an eventual
return to normal blood flow.
Not only am I extremely proud and in awe, as to
all Libby has achieved with her career and personal dedication to such, so far,
but also, proud and honoured to be Godmother to the youngest of her very beautiful
daughters. Although, sadly my diagnosis has made me a less active Godmother
than I would have liked to be.
Libby recently had the pleasure of showing
Prince William around the new NHS emergency department at Aintree Hospital.
And, earlier this year, Libby met Daniel Craig,
who having been told about my obsession with him and how he helps me through my
Raynaud’s and scleroderma house arrest, kindly posed for this selfie. Thanks to
Jane the photographer!
I do not know if Daniel knows it, but he has
been a strong supporter of Scleroderma Awareness Month, June, for a few years
now… Thanks to USA patient Sharon!
DONATE, Click here
To view Thermograph Video, Click here
To view Nailfold
Capillaroscopy equipment (used to identify possible blood vessel damage), Click
here
To read My ‘Invisible
Disability’ experience, Click here
Please DONATE to help fund medical research
into the cause and cure for Raynaud's, at the Raynaud's Unit, The Royal Free
Hospital, UK.
All of your monies will be used for medical research purposes only, lead being, the world trail blazer Dr Kevin Howell.
 |
| Dr Howell and I, Sept 2017 |
#RaynaudsFreeWorld #RaynaudsAwarenessMonth
Facebook Page: Raynauds Unit Royal Free Hospital
Twitter: @RaynaudsRf
Living the dream,
hoping for a cure ....
To read my articles:
Raynaud's- How to Diagnose, Click here
This year, 2018, 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. Along with the Raynaud's world trail blazer, Dr Kevin Howell.
I am truly humbled and inspired by their work
ethic and commitment to their patients.
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
Global Patient
Profiles Campaign 2018 Index, Click here
Global Patient
Profiles Campaign 2018 Video, Click here
Importance of Medical
Research and Awareness Raising, Click here
NIHR Video: 'My
Experience of Clinical Trials', Click here
Becoming a Patient Research Ambassador for the NIHR, 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 Scleroderma Awareness 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
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.
for the illumination of the rare disease patients’ plight.
Rare Disease Day 2018, Research - Taking Part in
Clinical Trials, 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 Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
Although the following unmet clinical needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life.
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 Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
The Pandora’s Box of the rare autoimmune disease
Scleroderma, Raynaud's and Cancer, Click here
Although the following unmet clinical needs are not immediately life threatening, they cause havoc with the day to day quality of each patient’s life.
GUM RECESSION, TOOTH
EXTRACTS,
An investment in medical research will most certainly
improve the currently ‘soul destroying’ reality, these unmet clinical needs bring.
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 overall:
For optimum
patient care, 3 hallmarks preside:
Where, investment in medical research is
crucial, to improve the day to day reality, as well as, the long term outlook
for the entire global scleroderma community.
In the meantime, I
continue to remind myself that 'My Job Today is to Simply Get Better', with hope, and my canine diva dream team, as my constant companions.
Living the dream, scleroderma style.
Follow:
Facebook Page: Raynauds Scleroderma Awareness Global Patients
Twitter:
@SclerodermaRF @RaynaudsRf
#SclerodermaFreeWorld
#RaynaudsFreeWorld
#IamScience
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 
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