Patient to Patient Experience
Symposium 2016
By
Empowered Patients for
Patients & their Caregivers:
A Public Health
Perspective.
Endorsed by Bob Saget
 |
| Dr Susan Nyanzi |
From my own
experience as a patient for 40 plus
years, a Public Health Practitioner and a clinician, I have seen and
experienced how lifestyle strategies improve emotional (less depressed),
physiological (not so many aches and pains), psychological (have a better
outlook on life) and physical (more active) well-being.
The retreat was put
on by empowered patients for patients, their caregivers and health care providers.
Our first was on
November 18th – 20th 2016. The event was additionally
endorsed by Bob Sagget and we got our 15 seconds of fame on one of the local
new channels!
The majority of
attendees were women between the ages of 30 and older. In addition to patients
we had physicians, nurses and public health professionals.
The main goal of the
retreat was to educate and empower patients, make the retreat affordable and
host the event in a tranquil and healing environment.
Hence a resort
over-looking the beach with walking trails and scenic views.
Sunrise Walks
The retreat was
different in that we had sunrise walks and yoga and majority of speakers were
patients sharing their stories.
Leading specialists
such as Dr. Clements held intimate group sessions and gave great presentations.
We additionally had sessions on proven alternative treatments, these included
medical hypnotherapy nutrition and food allergies, compounded medication and
Myofascial Release (MFR).
Anti-inflammatory Paleo Meals
In addition to this
an anti-inflammatory, a dairy free and gluten free diet was developed for the
whole weekend.
From experience, many
Scleroderma patients (and other autoimmune conditions) already follow a paleo
diet because it reduces and eliminates GI related issues, muscle and joint
pain, skin rashes and “Froggy brain.”
Many patients made it
back to the educational sessions and maintained their energy level for each
full day, days that’s started at 6:20am and ended 10pm.
Empowerment sessions
were also part of the program, we wanted to show patients how to turn a passion
into a business.
One patient speaker
turned blogging and use of social media to increase awareness of Scleroderma
into a business, another an accomplished seamstress showcased awarding quilts,
hand-warmers and bags that she made and an avid reader turn to writing novels
as therapy but also into a business.
Well we met and
surpassed our goals, attendees all said we increased their knowledge on how to
better manage Scleroderma, we created a good strong support system that is
active daily on FB and growing and the majority of the attendees loved the program
and venue.
In addition to this
the retreat exposed patients to lifestyle strategies by having them feel the
results.
By the end of the
weekend everyone enjoyed the event. It was rewarding to see smiling faces
throughout the weekend patients captivated by the sunrise walks, enjoying the
anti-inflammatory meals and the patient driven discussions.
Sunrise walks have
been shown to reduce depression, improve movement, and increase high level
brain functioning and increase happiness.
Those that
participated in the sunrise walk were happier throughout the day and weekend.
They walked further and faster throughout the weekend, even those with their
oxygen tanks. The picture above is all of us right after the sunrise!
The
retreat was unique in that it was developed by fellow patients, it had a Public
Health perspective and attendees got to experience lifestyle strategies
throughout the weekend.
Because
of how they felt and what they learned from fellow patients, attendees requested
another retreat.
We
are in the early preparation stages for the next one in 2018! We needed to recover in 2017 J
Below
are just some of the comments we got.
See
you in 2018!
Testimonials
“Grateful to be spending some quality time
with some of my Scleroderma family. Great weekend of learning and bonding.” Sheila Howard Straub:
“Thank you Dr. Susan. I would not have
witnessed this if not for you” Donna
Hummer:
“Thank you Susan...And a special thank you to
all our wonderful sponsors!!! What an amazing time at the Patient to Patient
Experience Symposium !!! Cheers Susan A Nyanzi!!!, SO much fun!!! What an
amazing trip, had a blast. I love my sclero family!!” Jen Wells
“Such beauty & knowledge all around!!” Catherine Baca
“I
had so much fun meeting everyone!” Cherisse
Ciangi
“Dr.
Clements & Dr. Kafaja. I learned so much this weekend, meet some awesome
people. Lucy Wong, Chanel White going to join your blog, JoAnna Harper, Cynthia
& John loved your story looking forward to buying your book.
Lisa
Goodman can't wait to read your book.
Thanks
Susan A Nyanzi for making this happen” Maria
Hernandez
“I
never understood the "me time" concept until this weekend! This was
wonderful-informative, relaxing, invigorating. And I made a lot of new friends.”
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
When is the next one?
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