Patient to Patient Experience Scleroderma Symposium 2016 - Dr Susan Nyanzi

 

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 18^th – 20^th 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   

Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     

 

Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        

The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here

Key Event Dates 2018, Click here     

Importance of an Early Diagnosis, Click here     

Taking Part in Clinical Research Trials, Click here   

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here 

Expert Specialist Centres, Click here      

My Skin is Cured from Scleroderma, Click here      

UK Guidelines for Managing and Treating Scleroderma, Click here      

Fatigue, Click here      

Mobility, Click here    


Diet and nutrition, Click here     

Raynaud's, Click here  
   

World Scleroderma Day 29^th June 2016, Click here

World Scleroderma Day 29^th June 2017, Click here   


Why Global Collaboration is important to the Rare Disease Patient, Click here      

RARE DISEASE DAY:

The theme to this years Rare Disease Day is Research

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 UK Parliamentary Reception   


2017 Rare Disease Day Flashback  

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

  

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

INDEX

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

Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - here

The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19^th 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. 

1^st 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:

Raynauds Scleroderma Awareness Global Patients

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 

 

The Triumphs of Being Diagnosed With Scleroderma as a Child - Dr Susan Nyanzi

Dr Susan Nyanzi 

The Triumphs of Being Diagnosed With Scleroderma as a Child

If you have ever been told that you cannot do something in life, you will understand why I am crowdfunding and the story behind my compassionate plea for your generous support.  

At the age of 8, I was diagnosed with a very rare disease, Scleroderma. Hard word to say and harder to manage since there is still no cure. 

Treatments options are drastic, (cancer treatment options - infusions, chemotherapy and in severe cases stem cell transplant), and, the treatments are limited.  

As a child I heard the same message. “Do not do that, you will end up in hospital again.”  All I wanted to do was to be like my friends and experience what they did. 

Simple pleasures that a child experiences like birthday cake dripping with chocolate frosting were an issue because I had severe food allergies and Scleroderma had scarred my throat so badly, that cake would get stuck in my throat.  

I often could not play with my friends outside because I could fall, black out and end up back in the hospital with a concussion. 

This had already happened several times before, instead I could only watch my friends play outside. I really did not experience a ‘normal’ childhood, my ‘normal’ was different.  

Scleroderma is a chronic, autoimmune condition where the body slowly turns into stone. In my case, when I was diagnosed, the heart, lungs, kidneys and gut were shutting down so much, that my parents were told it was just a matter of months for me.  

The journey has been full of challenges, triumphs and setbacks but I have made it through.  Scleroderma is not a disease you walk away from and I refuse to allow it to define me.  My family took me home and never gave up hope. 

Together we began a mission to rebuild my health, increase awareness and educate everyone around us about this insidious disease. 
 

The challenges and triumphs shaped what I wanted to do with my life, I wanted to take the gifts I was given with this disease and help others, rather than allow the disease to overtake and define me. 

I received a Doctor of Public Health with a specialty in Chronic Disease Management. The goal was to empower and educate those with chronic conditions to take better care of their health. I got tired of sitting inside and watch the world go by, it was now my turn to give others hope, just like I was given hope. 

The why

Not everyone with Scleroderma knows how to manage it, treatment options are limited since it’s a rare disease and very few providers know how to treat it. 

After listening to story after story and sharing with others, I saw that there was no venue for the ‘older timers’ and there was not a venue where ‘we’ all could learn from each other. 

After talking about it for years and seeing a void, I decided to stop sitting by the side lines and do something.

Hence the Patient to Patient Experience Symposium, a retreat put on by empowered patients for patients, their caregivers and health care providers. Click here

Our first one was November 18^th – 20^th 2016. Our goal was to empower, educate and allow everyone to ‘bond’ and learn from each other. 

The second goal was to make it affordable for patients, so that they can focus on learning. 

Living with a chronic condition is challenging enough patients do not need to be reminded of other barriers. For $75 - $150, the patients’ stay package included, two night stay at a 5 star resort overlooking the beach, three course meals that were anti-inflammatory, and three days of educational sessions. 

The actual value for the weekend was $1500.

We had fun!!

ABOUT SUSAN:

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 more about Dr Susan's event Patient to Patient experience, Click here

 
Email: patient2patientretreat@gmail.com 
 

The event Facebook Page 

The Symposium Facebook Page 

Telephone: US 909-896-6957

 

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   

Scleroderma Awareness Month 2017 Patient Profiles Campaign, Click here     

 

Scleroderma Awareness Month 2017 Patient Profiles Campaign Patient Index, Click here        

The Pandora’s Box of the rare autoimmune disease Scleroderma, Raynaud's and Cancer, Click here

Key Event Dates 2018, Click here     

Importance of an Early Diagnosis, Click here     

Taking Part in Clinical Research Trials, Click here   

The Importance of a Multi Disciplinary Medical ‘Dream Team’, Click here 

Expert Specialist Centres, Click here      

My Skin is Cured from Scleroderma, Click here      

UK Guidelines for Managing and Treating Scleroderma, Click here      

Fatigue, Click here      

Mobility, Click here    


Diet and nutrition, Click here     

Raynaud's, Click here  
   

World Scleroderma Day 29^th June 2016, Click here

World Scleroderma Day 29^th June 2017, Click here   


Why Global Collaboration is important to the Rare Disease Patient, Click here      

RARE DISEASE DAY:

The theme to this years Rare Disease Day is Research

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 UK Parliamentary Reception   


2017 Rare Disease Day Flashback  

2017 Rare Disease Day unmet clinical needs to the scleroderma patient

  

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

INDEX

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

Scleroderma Awareness Month Campaign 2016, Click here

Links

View video, here   

Preamble - here

The Family Day at the Scleroderma Unit, The Royal Free Hospital is taking place on the 19^th 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. 

1^st 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:

Raynauds Scleroderma Awareness Global Patients

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