Friday, 31 March 2017

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 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.

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 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      



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  
  


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


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 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  


#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 

Thursday, 30 March 2017

29th June, World Scleroderma Day, 2016. The Origins of the date. Scleroderma, Raynaud's, Autoimmune Rare Disease


 







29th June - World Scleroderma Day 2016

The Origins of the date

Scleroderma, Raynaud's, Autoimmune Rare Disease



29th June is World Scleroderma Day.

This date is an opportunity for anybody with an interest in the rare disease, scleroderma (systemic sclerosis), to join together as a single, united global voice, to shine the spotlight on this relatively little understood rare disease. 

Due to the present unwelcome reality that is currently so, for the rare disease patient, the patient often becomes the medical expert in their diagnosis and best care.
The actual date, 29th June, commemorates the date when the gifted Swiss-German artist, Paul Klee (1879 – 1940) died.

The Wikipedia entry for Paul Klee includes:

‘In 1933, Klee began experiencing the symptoms of what was diagnosed as scleroderma after his death. The progression of his fatal disease, which made swallowing very difficult, can be followed through the art he created in his last years. His output in 1936 was only 25 pictures. In the later 1930s, his health recovered somewhat and he was encouraged by a visit from Kandinsky and Picasso……..

Klee suffered from a wasting disease, scleroderma, toward the end of his life, enduring pain that seems to be reflected in his last works of art.

One of his last paintings, Death and Fire, features a skull in the center with the German word for death, "Tod", appearing in the face. He died in Muralto, Locarno, Switzerland, on 29 June 1940 and was buried at Schosshaldenfriedhof, Bern, Switzerland.’

This is most interesting for me to learn, since I recently posted a quote by Picasso about the meaning of life, on my cosmicfairy444.blog


 

Klee’s work was, and is, still admired around the world today. 

It is interesting for me to read, having been on the scleroderma fun bus for nearly 20 years now, that his main work focus was movement and fluidity, with him writing in 1920, ‘Motion is at the root of all growth’. 

And of course, his diagnosis of diffuse scleroderma would have severely impeded his personal movement, and it is this, his symptoms, which are thought to have inspired his later work, which was block based themed.

The book: Paul Klee and His Illness: Bowed but Not Broken by Suffering and Adversity Translated from the German by G. McKay; N. McKay 1st Edition is available to buy and includes a similar diagnosis nightmare as seen today, although, a maybe quicker today, thankfully:  

‘It is thought that it was not until 10 years after Klee’s death that the illness was actually given the name ‘scleroderma’. 

This was due to a pioneering dermatologist and venereologist, Dr Hans Suter, who had been fascinated by Paul Klee and his art which spurred him to commence research into the illness and its influence on the art of Paul Klee’s final years. It was due to Dr. Suter’s meticulous investigations that Klee’s illness could be defined as ‘diffuse systemic sclerosis………’

‘In this book the author assembles his findings and describes the rare and complex disease in a clear and comprehensible way. Further, he empathetically interprets more than 90 of Klee’s late works. 

The point of view of a dermatologist renders a unique source of information. It provides, on one hand, new insights into everyday medical practices at the University of Bern in the 1930s, which will fascinate doctors and local historians alike. While, on the other hand, art historians and art lovers will be absorbed by the newly discovered links between Paul Klee's work and his illness.’  

For more info, Click here

HOW YOU CAN GET INVOLVED:

Keep up to date with the latest information on World Scleroderma Day 2017 by following this blog and linked Facebook Page   

also follow:

Click here, to read my article for World Scleroderma Day 2017 

Click here, to read my synopsis of Scleroderma Awareness Month 2016   

In all articles I offer suggestions on how to get involved, regardless of your physical ability.

To view my article 'why global collaboration is so important', Click here   
 





WORLD SCLERODERMA DAY 2015:  

I had the pleasure of being a presenter and part of the European co-hort who gave a presentation at the European Parliament, Brussels, in honour of World Scleroderma Day 2015.  

To view the presentation, Click here






I had not been abroad for over a decade prior to this trip, and my 7 week bed rest following the trip, was a harsh reminder as to why I had not been away for so long!!


Let’s make 2017 the noisiest World Scleroderma Day so far, as together, united globally we will crack the Ssc code ~ living the dream, in the hope for a cure :) 




An edited version of this article was published here, in my Column with Scleroderma News. April 2016. 


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   


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 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      



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  
  




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



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 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  


#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