My Birthday; the Invisible Moment between Rare Disease Day and MS Awareness Month

My disease, Multiple Sclerosis , isn’t so rare anymore; with an estimated 1 million in the US, and 2.8 million in the world diagnosed.

I was two weeks away from my birthday in the above photo. My boyfriend had just sent me flowers for Valentine’s Day and a strange tingling is spreading on my left side. In two weeks I’ll be diagnosed with MS, a #raredisease in 2004.
Behind me you can see some plans for doctors appointments and visa applications. Trying to find out if something is wrong, before traveling to South India for the summer.
Everything changed in a Hospital Hallway, five days after that birthday.

Today is Rare Disease Day. My birthday is in an invisible space between that day and #msawarenessmonth

I didn’t go to South India that year, and instead traveled to be with my Grandma, and visit boyfriend who was at a nearby university. I went to India the next summer, and the summer after that. I stumbled. I got up and am still going.

MS is not so a rare a disease anymore. It’s unfortunate because there are so many more of us, suffering from this disease. On the other side of the coin, there is more research to stop and reverse damage. To see if locked away cells in lesions can be accessed, to see if repair is possible.

Today I’m still here, in that space between #rarediseaseday and #MS awareness month, appreciating the time, and the Leaped birthday between them.

“May God be with you til we meet again.”

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

Create a website or blog at

Up ↑

%d bloggers like this: