Welcome to my blog - I was diagnosed in 1997, and given a 15month prognosis. In 1998 I became a patient at the Scleroderma Unit, The Royal Free Hospital. The cause and cure to both Scleroderma and Raynaud's remain unknown. Please donate to help fund medical research where 100% of your donation will be used for research purposes only.
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Sunday, 2 April 2017
Patient to Patient Experience Scleroderma Symposium 2016 - Dr Susan Nyanzi
PATIENT TO PATIENT EXPERIENCE SYMPOSIUM 2016
Dr Susan Nyanzi
From my own experience as apatient 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
Our first was on November 18th – 20th 2016.
The event was additionally endorsed by Bob Saget 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.
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
addition to this, an anti-inflammatory, 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
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.
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.
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.!
Below are just some of the comments we got.
See you in 2018!
“Grateful to be
spending some quality time with some of my Scleroderma family. Great weekend of
learning and bonding.” Sheila Howard
“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
never understood the "me time" concept until this weekend! This was
wonderful-informative, relaxing, invigorating. And I made a lot of new friends.”
ABOUT Dr SUSAN NYANZI:
Susan, is a long time survivor of Scleroderma, diagnosed as a child, she
learned early on how to manage Scleroderma and still lead a fulfilling and
enjoyable life. She is a graduate from Loma Linda University School of
Public Health with a Doctorate in Public Health with a sub-specialty in Chronic
Disease Management. As a Public Health professional, Dr. Susan specializes
in integrated lifestyle counseling for the prevention & management of
chronic degenerative disorders such as Scleroderma, Rheumatoid Arthritis,
Diabetes and Heart Disease. As a patient, Dr. Susan advocates for polices that
affect those with chronic conditions, presents at local & national
conferences & writes on Prevention & Public Health in local and
national magazines. As a Public Health Professor, Dr. Susan teaches adult
learners Public Health Policy and Management; Public Health Leadership and
Systems and Design and Analysis of Community Trials at the doctoral
level. She is a Master Certified Health Educator Specialist, (MCHES) a
Certified Gluten Free Educator, a member of the American College of Sports
Medicine and the Royal Society of Public Health.
her spare time, Dr. Susan will be found in the kitchen developing gluten free,
dairy free, corn free desserts.
To read ‘The Triumphs of
Being Diagnosed With Scleroderma as a Child’ by Dr Susan Nyanzi, Click here