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How a group of zebras changed the law to give EDS patients more treatment options

key information

source: The Mighty

year: 2017

authors: Lena Zerbinopoulos


We did it. With the help of our state’s fearless EDS leaders, or at least that’s what I like to call them, we got a herd of “zebras” to change the law. Initiated by our recently appointed New Hampshire Ambassador for NORD, along with one of the New Hampshire senators fighting for us, as a team, we seized the opportunity to make a change.

SB159 was a bill we proposed to add Ehlers-Danlos syndrome to the list of qualifying medical conditions for the use of therapeutic cannabis. It was introduced in January of this year but we would have to wait until the end of March to come in and read our testimonies to the Health and Human Services Committee and get the Senate to pass. Our superstars showcased what it was like to live with EDS on the local news the evening before. We were packed in the room like, well, a herd of zebras – just waiting to be heard. It was monumental for all of us.

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