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Judy Starts to Cross the Autoimmune Abyss
The document narrates Judy's journey through the challenges of diagnosing and treating her autoimmune disease, highlighting frustrations with the healthcare system and ineffective treatments. After extensive doctor visits and experimenting with diets, Judy finds hope and empowerment through patient communities and digital health tools. It suggests an integrated approach to autoimmune medicine that combines functional and conventional methods while fostering patient collaboration and knowledge sharing.
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Judy Starts to Cross the Autoimmune Abyss
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- 2. diseases US populaDon Top leading cause of death in women less than 64 yrs 7xless 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”
- 3. Name: Judy Age: 22 Symptoms: painful& variable gastrointestinal issues, hip/pelvic pain 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 physical therapist.. I’m so tired.. Hopefully these two specialists will know what to do. Possibly Autoimmune
- 4. 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 waiting game.. GI doc said, I’ve got visible intestinal inflammation and the blood biomarkers for IBD.. Inflammatory bowel disease. But, what about my hip? Foot?!
- 5. Status: Lost Alone Frustrated Rock Bottom Diagnosis: GI – Inflammatory BowelDisease Hip - ??? Which treatment should I choose? They all don’t seem really attractive. I’ve got to choose from 1. oral corticosteroids (potential ugly side- effect) 2. anti-inflammatories (scary...) 3. Injected monoclonal antibodies (Needles??) 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
- 6. GOOD NEWS! Status:hopeful and curious Treatment: 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.
- 7. JIY The internet isawesome. 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 way. Status: Feelin’ Good
- 8. I’m so gladI 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 treatments..
- 9. Status: Empowered & Comforted Diagnosis: AutoimmuneDisease Treatment: Work-in-Progress …
- 10. © 2015 - All rights reserved. What Will Judy’sBridge Look Like?
- 11. The Autoimmunity HypeCycle 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?
- 12. Integrated Autoimmune Medicine Thisapproach would be in an open system that fosters the growth of a global knowledge sharing community for autoimmune patients. Complementary Medicine Conventional Medicine
- 13. © 2015 - All rights reserved. Judy’s Research Links onthe Following Slides
- 14. Autoimmunity Incidence andPrevalence: • Why is Autoimmune Disease Underserved? • The Serious Health Concern All 20- somethings Should Know About • Becoming Visible • Statistics on AARDA Multidisciplinary Collaboration • The Lonely Voices • Getting to Yes! – Stanford MedX 2014 The Lonely Voices of Autoimmune Disease • Multiple Myeloma Research Foundation – spurred collaboration in new and different ways • Open Medicine Institute – Collaboration, Sharing, and Patient Power The Microbiome Lifeline • Can Science Explain Gut Feelings? • Is Your Gut Destroying You? • Rheumatoid Arthritis Starts in the Mouth? • Are We What We Eat? • More on the Microbiome as a Major Organ of Immunity
- 15. Finding Hope Outsidethe Doctor’s Office • MyHealthTeams • Crohnology – Crohns and Colitis • AutoimmuneMom • PaleoMom • FurtherFood 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
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