Bringing the Lonely Voices of Autoimmune Disease back to Stanford Medicine X 2015, DrBonnie360 describes an autoimmune journey through Judy's Story.
Judy finds hope in patient power, new data sharing and collaboration, and turning data into insights.
Bonnie Feldman, DDS, MBA - Business Development for Digital Health | www.drbonnie360.com | @DrBonnie360 | firstname.lastname@example.org | edited by Tiﬀany Simms
Bridging the Autoimmune Abyss
diseases US populaDon Top leading
cause of death
less than 64 yrs
7x less NIH funding than Cancer
Average 3.5 years and 5 doctors for diagnosis
“I was too young for “old people”
disease testing and care”
“It’s like the right hand doesn’t know what
the left hand is doing”
“Each doctor treated symptoms not the whole”
painful & variable
About a week ago, I went
to my doctor and told him
about my symptoms. He
didn’t have exact
answers… but, he did
refer me to an ob/gyn.
Today, that proved
inconclusive, so Doc said
he’s going to refer me to
a orthopedist and then a
I’m so tired.. Hopefully
these two specialists
will know what to do.
It’s been MONTHS. Nothing is working! My
stomach still has issues, and I’ve got
something going on with my foot, on top
of my hip pain!
I ﬁnally persuaded my doc to do something
more. I got to see a gastroenterologist,
she ordered some blood tests. Now, the
GI doc said, I’ve got visible
intestinal inﬂammation and the
blood biomarkers for IBD..
Inﬂammatory bowel disease.
But, what about my hip? Foot?!
Hip - ???
Which treatment should I
choose? They all don’t seem
I’ve got to choose from
1. oral corticosteroids
(potential ugly side-
3. Injected monoclonal
Update on my hip – so far,
I’ve seen a trigger-point PT,
soft-tissue PT, orthopedist,
podiatrist, yoga therapist,
and walking therapist.
Every single one is stumped… this quest is hopeless
Status: hopeful and curious
trying out diets & different foods
I found TONS of info and support on
patient communities the other day!
And guess what?
They’re all experimenting with diet to
help their GI problems! Or offering
different clinical trial options.
I think I’m going to try this out before
my next appointment. I hope I can opt
out of those scary treatments.
The internet is awesome. I
found these apps and digital
platforms to help me keep
track of my health.
For about 2 weeks, I’ve been
tracking what I eat and the
symptoms I’ve been getting. I
decided to cut out tomatoes,
peppers, & eggplant (Those
guys do not bode well for me).
So far, so good. I haven’t had
a hip/foot ﬂare up! Nor
intense GI ﬂares J
Fingers-crossed it stays this
I’m so glad I decided to look into
diets, there are a good amount of
functional medicine doctors that are
saying a diet change helped them
manage their autoimmune disease.
It’s been a couple months now and
things are looking up. In addition to
the Institute of Functional Medicine,
I found OpenMedicine.
They’re emphasizing patient power,
collaboration, and data sharing.
Deﬁnitely hope I can see this happen.
It would’ve helped me bypass the
merry-go-round of doctors and
The Autoimmunity Hype Cycle
What if we could take the best
of functional medicine, looking
at the root cause of disease,
and combine it with the open
data sharing and analytic
capabilities of the OMI?
How can we create new centers
where Judy feels supported,
encouraged, and empowered?
How can we give Judy and her
team an expanded toolkit which
uses the best of conventional and
complementary approaches so
that they don’t get stuck in the
trough of disillusionment?
Integrated Autoimmune Medicine
This approach would be
in an open system that
fosters the growth of a
sharing community for
Autoimmunity Incidence and Prevalence:
• Why is Autoimmune Disease
• The Serious Health Concern All 20-
somethings Should Know About
• Becoming Visible
• Statistics on AARDA
• The Lonely Voices
• Getting to Yes! – Stanford
The Lonely Voices of
• Multiple Myeloma Research
Foundation – spurred collaboration
in new and different ways
• Open Medicine Institute –
Collaboration, Sharing, and Patient
The Microbiome Lifeline
• Can Science Explain Gut
• Is Your Gut Destroying You?
• Rheumatoid Arthritis Starts in
• Are We What We Eat?
• More on the Microbiome as a
Major Organ of Immunity
Finding Hope Outside the Doctor’s Office
• Crohnology – Crohns and Colitis
Empowering the Patient through Digital Health
• Ubiome – Microbiome Testing
• Smart Patients – Drug and Clinical Trial Options
• The Importance of Data Tracking
• Quantified Self – Self Knowledge through Numbers
• MyNutritionHealth – Tracking Symptoms in relation to Food
• The Autoimmune Summit
• Susan Blum
• Mark Hyman
• Amy Myers
• Terry Wahls
• One Size Does NOT Fit All
Diet Experimentation and Patient Communities
• Bridging the Autoimmune Abyss, a View from the Bottom Up
– Larry Smarr
• JIYO – a Personal Well-Being Companion
• The Institute of Systems Biology and Arivale with Lee Hood –
Understanding your genome, microbiome, and lifestyle