Lori
Pierce, USA
Patient
Profiles DAY 25
June
Scleroderma Awareness Month 2017
Raynaud's, Autoimmune Rare Disease
 |
| Lori Pierce, USA |
Name:
Lori Pierce
Location: Tampa,
Florida, USA
Diagnosis: Scleroderma, Raynaud’s, ILD,
Cardiomyopathy, Thyroid disease, Pulmonary Hypertension, GERD, gastroparesis,
finger contractures
Year of Diagnosis: 2002
Age at Diagnosis:
25
Where / Who diagnosed
you?
Dr Fred Wigley, John Hopkins Scleroderma Center
How long did it take for you to be diagnosed
after your first symptoms?
Immediately
Please describe your
experience:
Primary care doctor diagnosed Raynaud’s and did
the blood work which presented with a positive ANA.
He then sent me immediately to Hopkins because
he thought ‘maybe’ I had scleroderma… a disease he knew nothing about, and had only
heard of.
What are your 3 biggest current challenges due
to your diagnosis?
Hand contractures slow daily
functions
Gastrointestinal issues make weight gain
difficult to impossible
Fatigue limits endurance for any
activity
What are your 3 top tips for living with your
diagnosis?
Keep a positive attitude and do not give
up
Change your diet and eat ‘as close to the
vine’, or as clean as possible. This really alleviates a lot of symptoms –
especially those that are inflammatory
Try yoga to help maintain range of motion,
flexibility and to assist in slowing effects of fibrosis in the fascia. It CAN
be done with adaptations and props.
I have created my own yoga practice that way.
It really CAN change your life and keep you
moving.
What are your 3 wishes for the
future?
To live as full a life as possible for as long
as possible
To give back and to help others learn to make
their lives as full and rich as possible, in the face of this
condition
Keep building a strong Scleroderma community,
full of support and positive lives
Huge thanks go to Lori for sharing her
scleroderma reality and experience in such detail, for scleroderma awareness
month.
To follow Lori’s blog, Click here
To follow Loris’ Facebook Page, Click here
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 2016.
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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