Lori
Pierce, USA.
Scleroderma Awareness Month 2018.
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.
2017 reality:
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.
June 2017.
June 2017.
2018 UPDATE:
As of this moment, my
Scleroderma is stable with no new activity.
My only current ‘complaints’,
are all as a result of damage done, in the past.
In the fall of 2017,
I had an esophageal dilation done to alleviate some issues and have been doing
well since.
I also had the three remaining fingers on my left hand partially amputated at the middle knuckle. They were completely curled into a fist.
The amputations have
made life much easier and more manoeuvre-able.
No more knuckle sore
or finger tip ulcers, either!
Current SYMPTOMS:
My mornings start
with mild aches, pain, and stiffness. Evenings end the same way.
I am working through
a frozen shoulder as best I can.
Osteoporosis is my new focus.
I'm working on diet
and weight bearing exercise, in an effort to avoid taking medication.
I continue to be monitored by a cardiologist for an arrhythmia and heart failure issues as a result of previous scarring.
All are staying
stable with medications.
Current MEDICATIONS:
Carvedilol, Enalapril,
Nexium, Synthroid.
I also take a multivitamin and use CBD Hemp Oil.
The CBD oil has been
a HUGE game changer in terms of my Raynaud’s and GI issues.
I was able to visit
the mountains, which I love so much, for the first time in nearly 15 years IN
THE WINTER!
My Raynauds isn't
gone, but the cold tolerance is significantly improved!
 |
| Montana |
 |
| Natural Bridge |
RESEARCH 2018:
In 2003-2004 I
participated in a couple of trials. None recently.
I can't give advise
on whether other patients should participate in clinical trials, because I
believe it is a very personal decision, and each trial would need to be
researched extensively before making an informed decision.
I personally believe
that most of our health issues are related to diet and environmental factors
and can mostly be remedied with diet and lifestyle changes.
Knowing what I know
now, I would not choose to participate in any pharmaceutical trials for myself.
IN BETWEEN MEDICAL APPOINTMENTS:
I live as calm and
stress-free life as possible.
I focus on self care
for my health and well-being.
I care for the
animals that I live with.
 |
| Lori and Sequala |
I am limited in a lot
of things, but I still keep my body moving as much as possible through yoga,
light weight exercises, pedalling equipment, and walking/light hiking.
I help to manage and
present Yoga for Scleroderma where needed to help Scleroderma patients keep
their bodies moving, too.
I also do some
computer based work from home for a yoga studio here in Tampa.
Huge thanks go to Lori for sharing her
scleroderma reality and experience in such detail, for Scleroderma Awareness Month, and, Huge Thanks to Lori, for all of her awareness efforts throughout the year.
To follow Lori’s blog, 'ScleroScoop' Click here
To follow Loris’ Facebook Page, Click here
To read my articles:
Current Unmet Clinical Needs 2018, Click here
CALCINOSIS, Click here
GUM RECESSION, TOOTH
EXTRACTS, Click here
SOFT TISSUE, ULCERS,
Click here
TELANGIECTASIA,
Click here
SCLERODACTYL HANDS,
Click here
INVISIBLE
DISABILITY, Click here
RAYNAUD'S, Click here
GASTROINTESTINAL,
Click here
 |
| Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo. |
'Scleroderma
Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here
Global Patient
Profiles Campaign Index, Click here
Importance of Medical
Research and Awareness Raising, Click here
NIHR Video: 'My
Experience of Clinical Trials', 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 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
All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as:
Early Diagnosis
Expert Specialist Centres
Access to innovative medicines
ALL being, crucial factors for best practice management and care.
To read my articles:
Raynaud's, Click here
This year, 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.
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. Read more, here
For latest updates follow:
Facebook Page:
Twitter: @SclerodermaRF @RaynaudsRf
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#SclerodermaFreeWorld
#RaynaudsFreeWorld
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: June 2018
No comments:
Post a Comment