Tuesday, 5 June 2018

Dr Susan Nyanzi, USA. Scleroderma Awareness Month 2018. Scleroderma, Raynaud’s, Autoimmune, Rare Disease

Dr Susan Nyanzi, USA. 
 Scleroderma Awareness Month 2018. 
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 overgrowth.

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 or 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 has not 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 it’s 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 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 

  



2018 UPDATE

Current SYMPTOMS:

GI issues.


Current Medications:

Blood pressure and GI meds.


RESEARCH 2018

Have you taken part in a research trial?

No.

Would you advise others to take part in research trials?

Yes  ….. We are a rare condition, andso we have less resources and funds.

The more people we have taking part in studies the better off it will be for everyone as we will get better results.

Besides medical clinical trials we need more public health community based intervention that look at how “we” live on a regular basis and what preventive measures we can incorporate.

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. 

 


Current Unmet Clinical Needs 2018: 

CALCINOSIS, Click here  

GUM RECESSION, TOOTH EXTRACTS, Click here 

SOFT TISSUE, ULCERS, Click here  

TELANGIECTASIA, Click here 

SCLERODACTYL HANDS, Click here   

INVISIBLE DISABILITY, Click here 

RAYNAUD'S, Click here 

GASTROINTESTINAL, Click here



Prof Chris Denton presenting a plaque to Kevin's daughter, Michelle, and wife, Debby, for funds raised in Kevin's memory for medical research at the Unit. Thanks to Michelle for the photo.
  
'Scleroderma Awareness Month 2018: Medical Research Fundraising, RIP Kevin East', Click here  
Global Patient Profiles Campaign Index, Click here
Importance of Medical Research and Awareness Raising, Click here
NIHR Video: 'My Experience of Clinical Trials', Click here 
Week 3, 2017 Patient Profiles: Medical areas of current interest, Click here
Week 2, 2017 Patient Profiles: Progress in Medical Research, Click here 
Week 1, 2017 Patient Profiles: Introduction to multi complex disease, Click here
Why I chose global Patient Profiles for my 2017 / 2018 Campaign, Click here 
 
2017 Global Patient Profiles Campaign Introduction, Click here 
 
'Being your own awareness advocate', Click here
 
Scleroderma Awareness Month Flashback 2017, Click here 
Scleroderma Awareness Month Flashback 2016, Click here 
My 2016 Campaign, A to Z: Scleroderma and Raynaud's diagnosis, Click here 
 
2016 Campaign Video, Click here 
March 2018 Autoimmune Disease Awareness Month, Click here 
World Scleroderma Day 2017, 29th June, Click here 
World Scleroderma Day 2016, 29th June. Origins of the date, Click here 
World Scleroderma Day 2015, 29th June. 

James Carver, myself, Prof Chris Denton

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.  

I am immensely grateful to James Carver MEP for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.  

To view the presentation, Click here 


To view my article 'Why Global Collaboration is Important', Click here

All patients included within the global patient profiles campaign, highlight the URGENT need for an investment in medical research, as well as: 


Early Diagnosis 
Expert Specialist Centres 

Access to innovative medicines 

ALL being, crucial factors for best practice management and care.  

To read my articles:
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   
This year, I am celebrating 20 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre. 
Sept 2017

Prof Chris Denton and I, 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. Read more, here
For latest updates follow: 
Facebook Page:
Twitter: @SclerodermaRF  @RaynaudsRf  
#SclerodermaFreeWorld           #RaynaudsFreeWorld
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: June 2018

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