Sarah
Jatto, UK
Patient
Profiles DAY 27
June
Scleroderma Awareness Month 2017
Raynaud's, Autoimmune Rare Disease
 |
| Sarah Jatto, UK |
Name: Sarah Jatto
Location: London
Diagnosis: Systemic Scleroderma
Year of diagnosis: 2009
Age at diagnosis: 19
Where / who diagnosed you?
Rheumatologist
at Chelsea & Westminster Hospital
What were your presenting symptoms?
Swollen
fingers
Swollen
face
Hypo
depigmentation to my skin
Tightness
of face, mouth, torso and arms
Raynaud's
How long did it take for you
to be diagnosed after first symptoms? Please describe your experience:
It
took 2-3 years to be completely diagnosed.
When
patches appeared on my face my doctor treated it as a “virus” from the sun and
gave me Canesten. When I realised the “virus” patch was not healing I revisited
my GP. Upon arriving, she noticed my swollen face and hands, sent me for a
blood test and later a vascular surgeon.
Current reality
9
years of having Scleroderma and I feel it has stabilised
Please describe your current
symptom involvement and management, including any treatments taking and taken:
I
still suffer with Raynaud’s and, severely.
I have
contracted fingers, hypo depigmentation and scarred lungs.
I
currently take Methotrexate, prednisolone, folic acid, omeprazole and
fluoxetine.
What are your 3 biggest
current challenges due to your diagnosis?
Getting dressed
Acid reflux
Raynaud’s
What are your 3 top tips for
living with your diagnosis?
Take
one day at a time
Keep
stress levels down
Rest
often
What are your 3 wishes for the
future?
Find
the cause of Scleroderma
Find a
cure
For
patients to live happily ever after Scleroderma.
Scleroderma
is very unpredictable, it takes a lot of listening to your body, understanding
it, knowing your boundaries and not surpassing them.
Huge thanks go to Sarah for
sharing her scleroderma reality and experience in such detail, for scleroderma
awareness month.
To follow Sarah’s ‘Me&Sclero’
Facebook Page, Click here
You can also follow 'Me&Sclero' on Twitter and Instagram.
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
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
You can also follow 'Me&Sclero' on Twitter and Instagram.
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 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
No comments:
Post a Comment