Primary
Raynaud’s - Jane Ogilvie.
Raynaud’s
Awareness Month, October 2017.
Scleroderma,
Autoimmune Rare Disease.
Raynaud's symptoms
can present on their own, where it is known as 'Primary' or they can present
with another diagnosis, eg. autoimmune diseases, such as Scleroderma, where it
is known as, 'Secondary'.
Jane Ogilvie shares
her experience of how she manages her primary Raynaud's symptoms during the
winter, as well as, during the spring, whilst attending to her 'outdoor
pets', Max- her horse being only a part, of her 'mini zoo'.
Jane describes her
initial visit to her GP and the subsequent medications which she has tried, and
now, no longer takes, due to the side effects outweighing the
benefits.
Read more, here
During the frosty
mornings, Jane must wear the appropriate clothing to try and prevent Raynaud's
attacks to her hands and feet.
She describes the
different materials and clothing which she has found to work for her the best,
in terms of maintaining optimal heat.
Read more, here
Huge thanks go to
Jane for sharing her Raynaud's experience for Raynaud's Awareness Month,
October 2017.
I have had the
pleasure of knowing Jane for 24 years, having first met when we were both part
of the Boots Company Undergraduate Management Scheme 1993 - 1994. Before my
scleroderma and Raynaud's diagnosis, in 1997.
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 ....
Click here for Twibbon
October 2017.
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 Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
October 2017.
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 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
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: Raynauds Scleroderma Awareness Global Patients
#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
No comments:
Post a Comment