Featured Letter: In debate on medical marijuana, consider those with epilepsy

06/26/2015 6:00 AM |

To the editor:

As a parent of a child with epilepsy, it is upsetting to see how narrow-minded people are in response to medical marijuana, and the opposition people seem to have regarding it being grown locally.

There are children who have died, and will die, before they see medical marijuana become available in the State of New York, despite it being approved several months ago. Children with Dravet Syndrome can have as many as 300 grand mal seizures in a week. Despite being on multiple anti-epileptic medication therapy and surgical interventions, their seizure activity is intractable/uncontrollable. Parents watch their children have seizures every hour of every day, helpless to stop it. 

There are various strains of medical marijuana, and the most famous is Charlotte’s Web, which gained notoriety following a 2013 CNN documentary. There is very little THC (the portion of marijuana that creates the high) and very large amounts of CBD (cannabidiols, which doesn’t have properties to create a high) in this strain. Parents who have children so ill that they seek access to Charlotte’s Web have packed up their families for Colorado to gain access. This does not include children who are affected by other forms of epilepsy, like my own son, where every drug and surgical intervention has failed, and are anxious to give medical marijuana a try.

This is not an alternative medicine, an “out there” approach to epilepsy. My son’s own doctor, Dr. Steven Wolf, the director of pediatric epilepsy at Beth Israel Medical Center in Manhattan and one of the top pediatric neurologists in the country, is very involved in bringing medical marijuana to New York. He currently has formal studies underway and is very excited about the prospect of being able to improve the quality of these children’s lives with this treatment.

Will everyone respond as dramatically as some of the kids have? No, but for families that have children on several anti-epileptic meds with horrible side effects and still have children who are suffering from epilepsy, the chance to try it is one that many are waiting for. This is just one aspect of medical marijuana; it doesn’t even include the patients suffering from severe nausea and pain from cancer and other medical conditions.

The guidelines that Gov. Cuomo implemented for who can write a prescription and what medical conditions can be treated are incredibly stringent compared to other states. Having marijuana grown on the North Fork is not going to turn the area into a dangerous community, or one where everyone is lighting up; it’s going to save lives.

Valerie Boergesson, Southold

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