Monday 5 June 2017

Dr Susan Nyanzi, USA, June Scleroderma Awareness Month 2017, Raynaud's, Autoimmune Rare Disease, Patient Profiles DAY 5

Dr Susan Nyanzi, USA

Patient Profiles DAY 5  

June Scleroderma Awareness Month 2017

Raynaud's, Autoimmune Rare Disease 

Dr Susan Nyanzi, USA
Name:           Dr. Susan Nyanzi 

Location:       Los Angeles CA 

Diagnosis:     CREST, Fibro, Celiac

Year of diagnosis: CREST 1979, Fibro 2005, Celiac 2007 

Age at diagnosis: 8ys 

Where / who diagnosed you?
I was in England, diagnosed by Dr. Ansell, she was the guru at the time in Europe. 

What were your presenting symptoms? 

Admitted because my labs were all over the place and the docs had no idea. 

How long did it take for you to be diagnosed after first symptoms? 

3 years

Please describe your experience: 

I had actually seen several GPS in 3 different countries, it wasn’t until I was in really bad shape that I was sent to a specialty hospital in London, England, called Great Ormond street. 

It took them a while to determine what I had and after the diagnosis, I was only given months to live.

Please describe your current symptom involvement and management, including any treatments taking and taken: 

It’s in remission but still dealing with the side effects with the main ones being the small intestine and bacterial over growth. 

There are limited medications for the GI. Over the years, I’ve gone through all them, but found that lifestyle changes helped a great deal better than meds and they don’t have side effects. 

My academic training helped me better understand how the body works that now I practice as a Wellness Specialist with a sub-specialty in chronic disease. 

What are your 3 biggest current challenges due to your diagnosis?: 

The main one is the bacterial overgrowth, which can count for 3! 

What are your 3 top tips for living with your diagnosis? 

Eat as natural as possible (organic foods you will taste and feel the difference) for meats eat wild caught, farm raised are corn fed, which I’m allergic too. It seems many of the Scleroderma patients have allergies to corn, gluten and dairy).

Keep moving, exercise daily. 

Have a good social support system around you and find a way to continue to contribute to society, whether its through a regular job or being a entrepreneur.  

What are your 3 wishes for the future? 

The Scleroderma community will start to focus on many of us that have lived with the condition for years and have made it work. 

Give the old timers a platform (a retreat/conference) where they can share what has worked and what wasn’t worked. 

That’s why I put on the Patient to Patient Experience Symposium. 

Have all the organizations in the community work together and help each other because this is about the patient and they would find a cure a lot sooner. 

A proper diagnosis includes both lab and a physical examination. 

Lab results alone are not enough for a diagnosis. 

Make sure to join a support group because you will learn a lot, such as who are the good docs and who are the bad ones. 

Since its your body don’t settle on what one provider says. Always go to a second, third opinion and choose hospitals with Scleroderma centers. 

Although Scleroderma has no cure, it is not a death sentence. 

You can live life fully with it, just have to deal with issues as soon as they come up, have a support system around you, (it may be only be Scleroderma sisters and that’s better than nothing), get rid of the negative people because that just adds stress to the body. 

Change your diet to healthy foods, keep active physically and mentally. 

This is why I put on the Patient to Patient Retreat, to show patients there are always solutions and there are plenty of us that can offer support. 

To read ‘The Triumphs of Being Diagnosed With Scleroderma as a Child’ by Dr Susan Nyanzi, Click here    

To read Dr Susan's article 'Is a balanced healthy diet enough to manage chronic conditions', Click here
To read more about the Patient to Patient Experience, Click here   

Huge Thanks go to Dr Susan for sharing her scleroderma experience, as well as, huge thanks for all that she does for the global scleroderma community.  

To read more about why I chose ‘Patient Profiling and Research’ as the focus of my 2017 campaign, Click here     

Why Research and Patient Profiles? Scleroderma Awareness Month 2017, Raynaud's, Rare Autoimmune Disease, Click here   

2017 INDEX Scleroderma Awareness Campaign Patient Profiles, Click here    

INDEX to Scleroderma Awareness 2016 Campaign, Click here    

June 2017.
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      

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. 


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


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

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.


Last Update: April 2018

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