I went to see my doctor at Johns Hopkins yesterday. My doctor is amazingly good, and I really do *like* going to him. He’s intelligent, capable and he tells me like it is. There is never an issue of not knowing what’s really going on when I leave. That’s a bonus.

We discussed drugs I could go on (I’ve already run the gauntlet of most available drugs). The options left are a) a drug that could cause liver failure, and does in 1 out of 10,000 patients, OR a drug that is not FDA approved in the USA, but is approved in nearly every other 1st world country in the world. It’s known to actually HELP people with intractable epilepsy get better. It may not be a “silver bullet” but it may just be what I need to get to a place I can function.

The reason the drug has not been approved by the FDA here is because of money. It hasn’t been patented and no one has the money to run FDA trials. Millions of dollars go into FDA approval, and no one has it. So… What’s going to happen? I’m going to order my drugs from Canada. Oh, and my insurance? Yeah it won’t cover it because it’s not FDA approved… What a nice little cycle. This whole thing seems funny, as one of the main reasons Caroline and I are fighting for fundraising dollars is for exactly this reason. Without money, no one can run research for better treatment. Without research people like me are stuck. We’re stuck with things that cause liver failure. Joy of joys.

So. I’m going to order my drugs from Canada. I’m going to take the plunge into mail ordered drugs, and we’ll see how this goes. Maybe it will be my silver bullet, and maybe it will be approved in the US. Maybe my insurance will one day cover this med.

For those interested, the drug I’ll be taking now is Clobazam

Please consider donating to our cause. No one should have to consider these options. We should have a cure for epilepsy, and we should have it now. Donate here, donate now, and donate often.


Leave a Reply

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

WordPress.com Logo

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

Google+ photo

You are commenting using your Google+ 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

  • Meg
  • Reid B. Kimball


%d bloggers like this: