There is a treatment for Spinal Muscular Atrophy, the neuromuscular disease that I have. There are also several others coming down the pike, but… To the best of my knowledge, only one is currently deemed fit for public consumption. It is called Spinraza.
FDA approves first drug for spinal muscular atrophy
SMA Foundation DRUGS IN DEVELOPMENT
ANYHOW… Next week I will begin treatment with Spinraza. It seems to work REALLY well with infants and young children, less well as we age. Also, this is not a “one and done” treatment. I don’t get to swallow a magic bullet and began leaping around the room. This is more like insolent for a diabetic.
I will get two doses in April and and two more doses in May. After that, quarterly. For life. (Unless I tell them to stick it someplace else…)
Did I mention that they will withdraw some spinal fluid and replace it with medicine? I was actually going to do this last year, but… With my spinal fusion, it was difficult. They are going to do it with a CAT scan from a really weird angle.
Here is what some others with spinal fusions has said about the process:
My First Spinraza Injection Was Like Something Out of a Comic Book
(Absolutely not! They are not going to go through the side of my neck. If something goes wrong going into the lumbar region, it will mean the end of my track and field career. If something goes wrong and they inject that into my neck, no breathing or computer use.)
I admit, I’m a little bit nervous about the whole thing.
What Are Some Side Effects?
Yeah… It’s enough to make your hair fall out if you worry about it too much. I already have a good many of these symptoms anyhow. Nothing new under the sun…
But think about how awesome a Lisa who can move about a bit would be for the world!
My hope and prayer is that this will go well for you.