Diabulimia Primer

March 3, 2017

This week was National Eating Disorders Awareness Week and so I thought it would be a perfect time to share my “Diabulimia Primer.”  This is a document that I’ve crafted using the research on eating disorders in people with type 1 diabetes.  I take it to every doctors appointment (even endocrinologists) to explain what this eating disorder is all about.

I first developed it because no provider I knew understood the disorder.  So when they saw my extremely high blood sugars, instead of taking the time to understand what was behind them, they would judge me, threaten me, and give me lectures about how I would lose my limbs and die. Many didn’t believe me that insulin can cause weight gain and others still mistook me for someone with type 2 and would tell me I needed to lose weight.  That only made things worse.

In time I’ve found more and more providers have at least heard of the concept but they don’t have a great grasp on what it means or how and why it develops.  The document cites research because I know doctors won’t accept my word for it.  And once they’ve read this primer, they often come to a new understanding and are able to better help me with my treatment.

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Big Pharma Needs to Make a Resolution to Address Borderline Personality Disorder

January 2, 2016

Though 1.6% of the U.S. population have borderline personality disorder (some studies suggest actually up to 5.9% have the diagnosis), as of right now, there are NO FDA approved medications for the treatment of BPD.  I ask this year that Big Pharma make a resolution to address the treatment of and stigma surrounding BPD.

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My Experience as a PCORI Patient Merit Reviewer

April 7, 2013

I just returned from Baltimore where I participated in the PCORI Cycle II Merit Review process.  I learned a lot about PCORI, remembered a lot of my undergrad research (which I thought I’d blocked out), and brought the patient voice to what has been traditionally a scientists only club.

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Sharing Clinical Trial Data

March 30, 2013

While Big Data is a buzzword thrown about as a promise to change health and healthcare, the reality is we still have many barriers in realizing what our health data can really do.  Big Data is the concept of really large data sets.  As part of Obama’s Open Government Initiative, the government has posted an enormous amount of data sets generated by the federal government at Data.gov.  And they’ve released data specific to health at HealthData.gov clinical care provider quality information, nationwide health service provider directories, databases of the latest medical and scientific knowledge, consumer product data, community health performance information, government spending data.

But this data does not include data held by private companies or research institutions who conduct clinical trials.  This leaves data sitting in repositories that could improve public health, enhance patient safety, and spur drug development if shared more widely both within and across sectors.  But the tides are changing.

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Forming Nebular Health Tech in Austin

March 22, 2013

I want to repost this post from the new Nebular Health Tech group founded today in Austin, TX.  As you can tell from this blog, Health IT is incredibly important to me as a human rights advocate, an ePatient, a lawyer, and an activist.

Here is the story about forming Nebular Health Tech in Austin:

While other posts may be more innovation news oriented (guest posts welcome!), I wanted to start with a post about the formation of Nebular Health Tech – what this group is about, who we are, what we’ll do, how we can make a difference in health and healthcare.

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Happy Birthday, New England Journal of Medicine

January 6, 2012

The New England Journal of Medicine (NEJM) turns 200 this month.  First published in January 1812, this seminal publication has provided us with invaluable peer-reviewed research articles, editorial, and case reports.

The first issue had articles about croup, gunshot wounds, burns, syphilis, and spina bifida to name a few.  The latest issue  (January 5, 2012) has articles on heart disease and a herpes vaccine. In the centuries between, NEJM has covered a wide range of medical science, bringing the latest medical findings to not only our future doctors, but to the public.  NEJM articles studied the progress of epidemic diseases such as cholera, tuberculosis, and smallpox.  NEJM articles documented therapeutic innovation including the increased reliance on evidence based treatments proven through scientific experiments and peer review of the findings.  NEJM articles debated germ theory, introduced medical technologies like stethoscopes and  MRIs and published the first study linking smoking to lung cancer.  The impact of this publication cannot be understated in all its brought to us.

So Happy 200th Birthday, New England Journal of Medicine!

Thank you for all you’ve given us.

For a really amazing interactive timeline o the past 200 years of the NEJM go to – http://www.nejm.org/doi/full/10.1056/NEJMp1114819


Advances in Eradicating Malaria

October 20, 2011

Malaria “has been killing children and sapping the strength of whole populations for tens of thousands of years. Now we can chart a course to end it.

Eradicating malaria is not a vague, unrealistic aspiration but a tough, ambitious goal that can be reached within the next few decades. – Bill Gates

Bill Gates called for the eradication of malaria in 2007.  This week, the New England Journal of Medicine published the results of the phase 3 trial of a malaria vaccine by GlaxoSmithKleine (GSK) given to African children between 5- and 17-months old finding it to “provid[e] protection against both clinical and severe malaria.”  In fact, the halved the risk of those vaccinated from getting malaria bringing us one step closer to eradicating the disease – perhaps for many countries in the next decade.

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