April is almost here and I couldn’t be more excited! Soon I will be at the Boston Marathon cheering on my running partner, Lisa V! She’s there today participating in the Charity Run.
Many of you probably don’t know that seizures can be a part of having Metachromatic Leukodystrophy (MLD). Years ago, when I was first diagnosed I only had them occasionally. Then I started having “break-through” seizures and then they became more frequent – like every week. The doctors tried different combinations of anti-seizure drugs and even a vagal nerve stimulator. Everything would work for awhile and then stop working. Weekly seizures became a way of life. I never knew when they would hit. I’d be in a restaurant, at an amusement park, at home, or shopping. One time we were on a hike and I had to be carried out on a stretcher. My seizures last from 15 to 20 minutes and sometimes I have to be given a medicine called Diastat to stop them.
Seizures aren’t much fun but they don’t stop me! A change in my medication routine has taken the seizures back to less frequency and I’m grateful.
Seizures or not, I’m going to be there in Boston to cheer Lisa and the whole Genzyme Running for Rare Disease Team on!
Run on Lisa!
I think sharing our stories spread awareness, so thank you for that. We have such common bonds in our rare community, and with wonderful people like our Genzyme runners the support system is growing.