The Triumphs of Being Diagnosed With Scleroderma as a Child
Treatments options are drastic, (cancer treatment options - infusions, chemotherapy and in severe cases stem cell transplant), and, the treatments are limited.
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.
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.
Together we began a mission to rebuild my health, increase awareness and educate everyone around us about this insidious disease.
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.
Our first one was November 18th – 20th 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.
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
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
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice