Those of you who spend any time in hospitals know that while the relationship you have with the specialist is of critical importance. The life of your child is often quite literally in their hands and you must have the utmost trust in their judgement and in your ability to community care effectively with that person. [...]
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If you haven’t you should! You can track your health information on-line and get links to health information that has some credibility. Unfortunately my health provider has not partnered with Google so I can’t seamlessly integrate with Google. I have to scan and upload documents. But it allows me to keep all of our records in [...] I am white and educated. I have certain privilege that come along with these attributes. But I also made below the poverty line last year, my children are on Medicaid and I’m a single mom. These are attribute that put me squarely in the “have- not” category in the world of privilege and power transactions. I think about this a lot in [...] Okay, this post does not have much directly to do with rare pediatric diseases but it has a lot to do with what interests me… getting real people to make small changes that significantly support people’s health related needs! An undergraduate student at Harvard observed at hospitals and realized that often there was nothing the doctor [...] I recently did an informal survey about health care quality for one of my classes and found that good communication between patients and doctors, between specialists and between medical personnel at different levels were rated as the most important characteristics of high quality health care by my classmates. In my experience I know that I have [...] I can’t imagine having to wait months to see a specialist. I remember in January of 2008 when my son was diagnosed with a rare pediatric disease, Juvenile-onset Recurrent Respiratory Papillomatosis(JORRP), a condition in which benign tumors grow in the larynx with the danger of growing to the point of airway obstruction. I walked out of [...] |
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