I was twelve years old when I was diagnosed with multiple sclerosis (MS) in 1999. There was very little research about MS and treatment options were limited. I was a young girl and choosing from one of three medications had some serious implications. One of my main concerns was how treatment would affect fertility. None of those three drugs had been tested on adolescents so my doctors were not able to provide guidance on which treatment to choose.
Now you might think that at that stage, I would have just picked out of a hat so that I would at least begin treatment. Thankfully, I was a tenacious little girl who also believed she could do anything. I set out to learn everything I could about each of the three treatment options. This was back in the day when we relied on dial-up internet, and Google didn’t even exist. I got my hands on the actual journal articles that were written about the initial studies of each of the three drugs available. As a 12 year old, that only led to more questions. I was learning an entirely new language – cytokines, the difference between Th1 cells and TH2 cells, immunoglobulin! That was just the vocabulary! I also had to understand the statistics. What makes something statistically significant? What is a margin of error?
But I did. I learned it all and I asked my doctors and pharmaceutical companies about things I didn’t understand. You can imagine the shock on the other side of the phone when they heard a child using these words and trying to get clarity about a particular aspect of their study. It’s hard to hang up on a kid though, especially one who was trying to protect her future family and took the time to read these insanely long journal articles.
I was twelve. And I did all my own research in order to determine the ONE drug that had no evidence of impacting the reproductive system. It was that important. In truth, isn’t it always that important? We tend to think that if doctors suggest a treatment that it will be a perfect solution. But, it’s my body and I want to know all the fine print.
Fast forward to when I was 21 and doing my own research might have quite honestly saved my life! I needed to switch medications because I was getting very sick. There was a new treatment that was not anything like the interferon I was on – Tysabri. It seemed like a miracle drug. Everyone was getting great results. So…I read the study. I didn’t accept my doctor’s encouragement to get on Tysabri “right away!” I was desperate to feel better but I also knew nothing about this medication and quite frankly, neither did the world-renowned MS specialists prescribing it to me- it was too early for any of us to really know. I discovered some concerning side effects, so despite the challenge of being without treatment, I opted not to start Tysabri. While I was without treatment, Tysabri was taken off the market for MS and researched much further- this allowed researchers to discover a way to prescribe the drug in a way that significantly reduced the fatal risk. When it was back on the market, I was excited to take it. Now I could look forward to getting all the benefits with a much better understanding of the risks and how they were being managed. I could finally feel empowered when choosing treatment.
This is the beauty of research and the scientific method. Scientists were able to take a drug that seemed to have very dangerous side effects, and find a way to provide it safely. We test things, let the evidence guide us, and dig deeper to ultimately create a more effective treatment strategy.
This is one of the primary reasons Sanguine works so hard to educate and empower patients to participate in research. Greater clinical research participation with more diverse individuals allows researchers to develop more personalized treatments with fewer side effects. As I wrote about in a previous blog, Why I Participate In Research, participating in research results in medications that are more effective with fewer risks.
Tysabri turned out to be by far the greatest drug of any I had taken for MS. I believe it changed the trajectory of my disease and am grateful to the patients who participated in all the Tysabri clinical trials so that I could safely benefit from such an effective drug. Incidentally, years later I met the researcher who discovered the use of Tysabri for MS and thanked him profusely for changing my life. But I had to feel safe….and when it was first suggested to me, it wasn’t safe, simply because of the way in which it was being prescribed. I am so glad I did my research, and I encourage you to always do the same. Educate yourself so that you feel empowered when choosing treatment.
In this day and age, information is more accessible than ever. I encourage you to be open to learning new things. We not only have access to research studies and encyclopedias, but also to youtube videos. Also, don’t be afraid to call the FDA or a pharmaceutical company to ask questions. Tell them you’re learning and express appreciation for their patience with your questions. I still do it to this day! I recently read a 170 page study (much longer than the average study!)- I had plenty of questions, so I took the steps to get answers.
And here’s the bonus! You’ll feel empowered when choosing treatment when you actually know this information. Being informed actually helps our medication work more effectively in our bodies. Check out my previous blogs called A Guide to Making Medical Decisions and 4 Ways to Help Your Medication Be More Effective to learn more about how to approach treatment decisions. Empower yourself and step into the relief of knowing for yourself. Take advantage of how lucky you are to be in a day and age where you easily have access to all of this information. You can do it! I’m cheering you on!
By Kaley Zeitouni