tinnitus
life
in
spired
A Numbers Game
w
Harnessing the power of patients who suffer from tinnitus and who share their experience with various treatments can lead to improved outcomes. By Hazel Goedhart More than four years ago now, I went to bed one night and noticed a loud piercing sound that seemed to come from my right ear. I didn’t panic right away, but a few days later I could not control my anxiety and ended up taking a few months of sick leave from my job. During the first week of this ordeal, I discovered the Tinnitus Talk support forum, where I read many stories from others suffering the same fate. It made me feel less alone and confirmed that I was not crazy for being so distressed about this phantom sound. I focused mostly on Tinnitus Talk’s Success section, where I was encouraged to hear from others who had, over time—even though their journeys were often hard and full of setbacks— learned to live with their tinnitus. I also got curious about tinnitus research due to the dedicated Research News section. I learned that little was known about the mechanisms causing tinnitus, and treatments were hard to test because they seemed to have very different effects on different people. Researchers call this heterogeneity, and it simply means that your tinnitus is likely different from mine. A couple of months later, when I was starting to feel better, I reached out to the managers of Tinnitus Talk to ask about volunteering opportunities. I understood that even though I was on a path of acceptance and had started to believe I could live a relatively normal life with tinnitus, not everyone suffering from tinnitus might be so lucky. I had read many stories that were all different. Some people got habituated but then had a setback due to a traumatic event. Others improved but never felt quite right. Most unfortunate of course are the ones who suffer for years or decades without relief. I wanted to do whatever I could to help them. I received a lovely response from the Tinnitus Talk founder, Markku, and after a few Skype calls learned a lot more about the nonprofit organization behind the forum, Tinnitus Hub. Run by just a few volunteers, I was amazed at what they had achieved. Not only were they running the forum, but they were also making contributions to tinnitus research through data collection. That really excited me! Knowing how much more there is to learn about tinnitus and its different forms, I thought surely a global online platform would be a great way of gathering large amounts of data. I was hooked and kept volunteering, up to and including today. I’ve taken on the role of director, next to my day job at a financial services firm. Academic research is a game of patience. A paper we coauthored was published in Frontiers in Neurology in January 2022, for which we gathered the data about five years ago. The data came from two surveys we conducted, with a total of more than 11,000 respondents. It’s important to keep in mind that this sample probably consists largely of people who were distressed enough about their tinnitus to seek help online—in other words, it’s not a random sample of people with tinnitus. But instead of viewing this as a potential obstacle to drawing useful conclusions, it’s helpful to remember this is also the group who
46
hearing health
hhf.org
ork
