I am a huge fan of Stanford School of Medicine’s SCOPE blog, and its ongoing series that features stories from patients affected by serious and often rare diseases. Stanford has partnered with Inspire to launch this series. If you aren’t familiar with Inspire, they builds and manage online support communities for patients and caregivers. Go to Inspire.com to learn more about them.
The latest post in this patient series is written by Joan Jahnke, a retired R.N. with experience in cardiac nursing, who resides in South Carolina. She has written about her heart experiences and been active on the Internet since 2008. In the end, Joan was diagnosed with cardiac endothelium dysfunction. In her post, she gives great advice to patients who are traveling that sometimes long road to diagnosis. With the unique perspective of a clinician and patient, she says that the squeaky wheel doesn’t always get the attention:
“My advice to anyone traveling on the difficult road to a diagnosis is to not become the difficult patient – that is, the patient who doesn’t keep track of tests or medication trials as the medical record grows in size, who doesn’t return for appointments, or who disrupts an office practice and makes accusations that no one is listening to his or her complaints.”
Joan’s story is definitely worth the read. You’ll learn about her “insistent, persistent and consistent” approach – one that made her a partner in her care – and one that led to her eventual diagnosis. Her daily journaling of symptoms helped the team at Emory Heart Center reach a diagnosis. In this case, Joan was her own best advocate!