Nahleen and I at last year's Walk MS (click above for more pics of us at Walk MS 2010)
Yesterday my wife and I got to experience first hand the benefits of the last several years of our friends, families, and in some cases complete strangers, donating to the National MS Society through our participating in the annual Walk MS events. (Last year, I walked in a dress and heels (right).)
My wife Nahleen was diagnosed with multiple sclerosis 8 years ago. MS is a baffling disease. There’s no cure and it manifests itself in everyone differently. She was put on a treatment of Betaseron, which required her to inject herself with a needle every other night. Yes, there are worse things in the world, but it hasn’t been pleasant.
Despite the challenges, we carried on and adapted to our altered lives. We kept working, got married, and continued to pursue our creative dreams, while also juggling doctors, insurance, appointments, tests, treatments, etc. Life continued on until her symptoms spiked dramatically last summer. Her liver kind of went bonkers and she got real sick. It turns out she also has lupus.
Apparently, multiple sclerosis and lupus are both autoimmune diseases, and one following the other isn’t entirely out of the question. (There’s also the possibility of mixed connective tissue disease but that’s not currently the theory we’re working under.)
Nahleen has worked extraordinarily hard since the summer to crawl out of that pit she was in. It is an extremely slow and gradual process. Fortunately she has a vibrant spirit.
A big step was taken yesterday. When her liver started evicting its residents, they took her off of Betaseron since it’s processed through the liver. So she has been without any MS treatment for well past 6 months. Through incredibly fortunate timing, a new MS drug called Gilenya recently became available. It is the first MS oral medication (meaning, it’s a pill). While still very new, it’s incredibly promising: less side effects for most and extremely effective in keeping the body from attacking itself.
Yesterday, Nahleen had her first treatment of Gilenya. There was no pre-medication necessary. No icing the injection site. No mixing of chemicals. No loading a needle into an injector. No stabbing. No fevers and flu-like symptoms afterward. Simply wash a pill down with some water. Emotionally and psychologically, this is a huge relief. The big stress was the 6-hour observation for the first treatment to make sure she wasn’t among the minority that responded poorly. Fortunately it went smoothly. From here on out, it should be a simple matter of taking a pill once a day at around the same time where ever she happens to be at that time. This is a definite improvement.
Of course, it doesn’t mean everything’s all better. There’s still a ways to go to recover from last summer. We’re taking this year off from Walk MS to focus on her recovery. But please consider walking on your own or donating to a friend’s walk. If you or someone you know is walking, please get in touch and I would be happy to feature you or them.
Nahleen and I have a lot of hope for the future. She is being treated for lupus and she now has new and improved treatment for multiple sclerosis. And that didn’t just come out of thin air. The National MS Society provided a lot of resources to get Gilenya to market. They helped with funding, research, and testing. I don’t think it’s hyperbole to say that if the National MS Society didn’t exist, Gilenya wouldn’t be here now. And the only reason they are as effective as they are is because of those of you have given on our behalf. Over the last 3 years, our team raised about $40,000. It is thanks to your inspiring generosity. Thank you.