Sarah
Lloyd, UK
June
Scleroderma Awareness Month 2017
Raynaud’s, Autoimmune Rare Disease
 |
| Sarah Lloyd, diffuse scleroderma patient, UK |
Name: Sarah Lloyd
Location: Shaftesbury, North Dorset, UK
Diagnosis: Raynaud's, MCTD, Systemic Sclerosis
Year of diagnosis:
Raynaud's & MCTD - Feb 1992
Systemic Sclerosis - Sept 2015
Age at diagnosis:
Raynaud's & MCTD - 26,
Systemic Sclerosis - 49
Where / who diagnosed you?
The Royal Free Hospital: Raynaud's & MCTD -
Dame Carol Black & Prof. Chris Denton
Systemic Sclerosis - Prof. Chris
Denton
What were your presenting
symptoms?
Circulation cut off / blue fingers
Constipation, GERD
Uulcerating fingers
Swollen hands
Thickening & hardening of the skin over the
body
How long did it take for you to be diagnosed
after first symptoms?
A Week? It was a long time ago!
Current reality:
Slow recovery from Systemic Sclerosis as a result of stem cell transplant.
Still have antibodies for both MCTD and
Systemic Sclerosis in my blood.
Still have severe Raynaud's.
Still have GERD.
Please describe your current symptom
involvement and management, including any treatments taking and taken:
I still have thickened skin on my face.
With the exception of my hands, the rest of the
skin on my body is becoming looser.
I have one finger ulcer which has been
troubling for two years. No new finger ulcers though.
Hands have deteriorated since the transplant,
with more thickened skin, stiff joints and curled fingers.
Management: Lots of moisturiser, hand exercises
(massage, manipulation, putty etc).
Raynaud's managed by keeping warm.
Medication:
Omeprasol, MMF, Bosentan, Fluoxetine,
Hydroxychloroquine, Clarithromycin, Ranitidine, Montelukast, Prednisolone,
Calcite, Vitamins various.
What are your 3 biggest current challenges due
to your diagnosis?
Inability to make my hands work due to
tightened skin, shortened tendons / curled fingers and my digital ulcer.
Inability to put gloves on due to misshapen
hands.
Inability to go outside for long due to
Raynaud's.
What are your 3 top tips for living with your
diagnosis?
Keep warm!
Keep exercising and stretching your hands.
Be careful of what you eat - nothing too acidic
that will promote GERD.
What are your 3 wishes for the future?
One wish only: to have my hands back!
To read Prof Chris
Denton’s presentation at the annual Scleroderma Family Day 2017, ‘Having a stem
cell transplant: Patient and Doctor Perspective’, featuring Sarah, Click here
Big Thanks go to
Sarah for sharing her scleroderma and Raynaud's
experience.
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
2017
INDEX Scleroderma Awareness Campaign Patient Profiles, Click here
INDEX to Scleroderma
Awareness 2016 Campaign, Click here
June 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 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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