Sunday, 2 April 2017

Patient to Patient Experience Scleroderma Symposium 2016 - Dr Susan Nyanzi

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 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.

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, 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.! 

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 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.”

Dr. 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.
In 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  


Telephone: US 909-896-6957

1 comment: