Greg’s MDS

It’s a little bit odd to have a website and blog about a disease, I suppose, especially if you have the disease. But I’ve found, when members of my extended family are diagnosed with something -- particularly something you might not hear about every day -- that it can be hard to find out exactly what they have, what they are doing about it, and how well that’s working.

If you have some unusual disease, folks who care about you often ask that you keep them posted. But when you’re already trying to keep all your doctors and appointments and medications straight, it can be hard to remember who you told about what and when. Then you wind up repeating yourself, and folks start to think maybe you’re slipping a little.

So this is my attempt to get the straight scoop about my MDS out to the folks I care about. You can read The Basics [See the menu up top] to find out about the disease. You can read the Campath Archive to find out about a clinical trial that didn’t work out as well as I had hoped. You can read the Danazol Archive, about a clinical trial that did buy me a couple-three years without transfusions. And you can read The News to get the latest on what I’m doing to live with MDS, as well as the details about my path to Stem Cell Transplant.

Just because I’m putting this stuff up on the web doesn’t mean you can’t call me to check in and ask questions. This is just a lazy man’s way of making sure I keep all my people informed.

So, enjoy, and thanks for caring. Give me a shout if anything doesn’t make sense. And, please, email me if you have any questions.


What’s MDS?

MDS is Short for Myelodysplastic Syndrome, which is really a bunch of related diseases all clumped under one fancy name. They all involve problems with the production of blood cells in  the bone marrow. See The Basics for more.

How did you get it?

MDS isn’t contagious, it’s not inherited, and, for the most part, no one has figured out what causes it.

Does it hurt?

I have lower-risk MDS; so far, it mostly affects my red blood cell production. So, I’m anemic, which makes me tire more quickly than I used to. I figured I was just getting old!

What can I do to help?

You can give blood through your local Red Cross blood drive. This is actually really important. If folks didn’t donate blood, thousands of people with MDS and related diseases wouldn’t have a chance. You can also register to be a bone marrow donor by going to this website and following the instructions.