I was visiting with family in August 2005 when I experienced some mysterious symptoms: I had a metallic taste in my mouth and, within a short period, I lost all taste in the right half of my mouth. Over the next day or two, the vision in my right eye was cloudy and quickly worsening.
Within five days, I saw six different doctors and had CAT and MRI scans to try and figure out what was happening. One doctor thought it might be a tumor, others had no idea what it could be. While traveling for business the next week, I received an early morning call from my primary doctor with a diagnosis: multiple sclerosis.
I was shocked. Fresh on my mind was the memory of my uncle who died only a year earlier after a long battle with MS. At the end of his life he was completely immobile. He couldn’t speak or feed himself or perform basic functions.
Learn why John Hamlet participates in clinical trials to help advance treatments for multiple sclerosis in his video below.
When I received the call, my wife was seven months pregnant with our first daughter, and all I could think was, “Would I be able to walk my daughter down the aisle?” I wondered about the ability to take family vacations, as my wife and I have always loved travel. I was also fearful for my brothers and sisters (there are six of us) and my cousins who had lost their father. Would they also discover they have MS? It was a scary time.
Within two weeks, I went to a neurologist who confirmed the diagnosis and spent a lot of time with my wife and me to help us understand the illness. When he learned I worked for PPD in the neuroscience area, he spent extra time educating me on the illness. In the following years, because of my work, I would run into him at conferences. Our shared passion for research became a great foundation and a positive aspect of our doctor-patient relationship. He could educate me and he could use my story to educate others.
Soon after my diagnosis, I signed up for an annual walk to raise money for MS. We decided to open the walk to the whole PPD office and invite people to join the team or donate to support us.
While the participation and the fundraising has been wonderful, what is even more impactful with this event is the opportunity to help others. Each year I hear from a couple of coworkers who have been diagnosed or know somebody diagnosed with MS. Like me, they are afraid of what this diagnosis means for them and their families, for their careers, for their future.
A diagnosis of MS usually comes in the prime of one’s early adult life, at a time of starting families and careers, at a time of dreaming of the future possibilities, and this diagnosis shakes all those dreams to the core. I speak with them and help them understand the diagnosis of MS, and their treatment options. I also can help them to see that the future of MS is not as bleak as the past, thanks in a large part to the research being done for new and better treatments. Each year, I share my story with a handful of people who were recently diagnosed, and I give them hope.
Research has changed the face of MS, and PPD is an industry leader in clinical research for MS. When my uncle was diagnosed in the mid-1980s, there was no approved treatment for MS. In the late 1990s, when I started in clinical research, there were three approved drugs for MS. In the last 15 years, there has been an explosion of approved drugs, bringing the total to more than 10 treatments.
When I received my diagnosis, a huge amount of research had yet to be done. The treatments included frequent injections, often with difficult side effects. Now I take a single pill a day. Currently, I have a light burden of disease, and contrary to my initial fears, I have a very active life; I travel regularly with my family, I am very involved in my kids’ school and activities, and I have continued to grow in my career, and am now a senior director of project management for PPD.
PPD has helped conduct some of the research that has helped our clients bring these medications to patients.
I have benefited directly from the research PPD has done. Clinical research certainly needs to continue to make progress and lessen the MS disease burden on others, and, I’m hopeful, discover a cure.