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.
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.
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.
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.
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.
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.
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 Dr Susan's article 'Is a balanced healthy diet enough to manage chronic conditions', 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
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
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: RaynaudsSclerodermaAwarenessGlobalPatients
#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
I agree with everything this good Dr. says!
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