Patients Included: Narcolepsy Patient Voice in American Journal of Medicine
The patient’s voice is rarely included in medical journals, but luckily, I love breaking down superficial barriers between patients and medical professionals. Check out: “Narcolepsy: Let the Patient’s Voice Awaken Us”, by Julie Flygare, JD and Sairam Parthasarathy, MD, (American Journal of Medicine, January 2015).
I feel so lucky to have collaborated with Dr. Parthasarathy on this project, he’s a doctor who listens to patients and takes action in support of patient empowerment. We co-authored this article to raise awareness of narcolepsy and sleep disorders amongst primary care and general practitioners. In the article, we suggest two simple questions to ask patients about sleep in the primary-care setting.
I am so encouraged and thankful that the American Journal of Medicine accepted and published our article. Learn more about the inspiring Patients Included movement here.
This week, I received the physical copy of the journal in the mail. Holding the journal in my hands was a quiet moment of personal satisfaction. I remember discussing this article idea with Dr. Parthasarathy two years ago. I lived in Virginia, before moving to Los Angeles and starting Project Sleep. We worked together over two years – writing, revising, submitting, revising some more…
Most of my efforts are not glamourous, fun or trendy. The benefits are not immediate or obvious. I may never know if this article leads to a quicker diagnosis for a struggling patient, but I’m hopeful. There are no quick fixes to the challenges we face as a community, but I believe that if we continue to focus on our strengths and work hard, we will make meaningful progress. This is just one piece of the puzzle but I’m proud of this small step in building a brighter future for sleepy people.
Read and share our article: http://dx.doi.org/10.1016/j.amjmed.2014.05.037
Way to go!
I have narcolepsy/cataplexy and every symptom of narcolepsy.Because of thousands of dollars of copays,I haven’t seen a doctor in 5 yrs.I haven’t been on xyrem for 5 yrs.I have many disturbing cataplexy episodes.I have thought of suicide when I’m having episodes.Is there any kind of assistance for disabled medical copays.
Congrats! This was a great article.