Raynauds Scleroderma Global Patients: The Triumphs of Being Diagnosed With Scleroderma as a Child

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^th2016. 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.

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