Advocating for Yourself with Kristen Kruczek and Abby Clawson

This session is aimed to help shine light on advocating for yourself from the perspective of Jazz Pharmaceuticals' Patient Support Team.
Panel Includes:
Kristen Kruczek, Senior Manager, Patient Support Services
Abby Clawson, Associate Director, Patient Support Services
and Moderator: Maureen Miller, Director, Consumer Marketing
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This seems to be a global phenomenon. Even so called Sleep Disorder Specialists here in Europe seem to really lack basic knowledge in treatment of sleep disorders and hide behind so-called guidelines instead of putting the patient’s need first, which ironically is what these guidelines say: Put the patient first, treatment is highly individually, keep the dire consequences of no adequate treatment of patients in mind.
Sleep Deprivation is considered torture, yet HCP do not hesitate to keep up this very state.
Most lack basic understanding as well as empathy to really understand, that in Narcolepsy for example people are physically unable to achieve the human rest mechanism. HCP don’t get it.
It is like missing two legs or being deaf or being blind.
It stuns me, that so called specialists really do not get the message that Narcolepsy means: from now on, you will never ever again be able to rest during your sleep phase. If N hits you with age of 15, you lack rest for 60-70 years!
Imagine that.