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.
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.
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.
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.
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.
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 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.
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.
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.
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 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
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
