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.
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.
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.
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:
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
Google Plus: RaynaudsSclerodermaAwarenessGlobalPatients
#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
No comments:
Post a Comment