In each issue, we spotlight a member of the bleeding disorders community. Here, we spotlight Matti Vann, the woman behind HemosUnite, a podcast for and about people with hemophilia.
Describe the HemosUnite podcast.
HemosUnite is a monthly podcast, where I interview people in the bleeding disorders community and ask them to share their stories. I talk to people from all different walks of life who are involved in the community in different ways, so it covers a variety of stories.
How did you first get started doing the podcast?
I was speaking at an event at Children’s Hospital Los Angeles, where my son is treated, on a panel that was moderated by Patrick James Lynch. While I was speaking, I mentioned that I was thinking about starting a podcast for people with hemophilia. I could see from the stage the crowd move in and lean forward. There was obviously an interest in this. I looked at my husband and said, “Well, we’re working late tonight.” We set up a website and started the podcast that night.
What did you want to accomplish through it?
I want to find people who have stories to tell and hope to give. I’m a member of a couple of different bleeding disorders Facebook groups. I sent messages to some of the people I had become friends with on those groups and told them I was starting a podcast and I would love to hear their story. I reached out to several bloggers in the community for Season One. Nearly everyone I contacted said yes. Really, I am blown away with how generous people are with their time.
Why a podcast?
I drive a lot, especially when I was living in Los Angeles, and podcasts are great if you have to live in your car the way we sometimes do. Also, I think podcasts are a great medium for sharing information. You get so much insight from listening to somebody speak about what they’re going through. You can pick out specific insights, and then hopefully pay the ideas forward. There’s no barrier to entry and it’s easy to learn to do yourself.
What equipment do you use?
I use a blue microphone, Audacity to do my editing and Skype. It cost me under $100. It’s not a huge financial investment if you want to create your own podcast.
What’s been your experience in the bleeding disorders community?
Like a lot of people, when my son was first diagnosed with hemophilia it was crushing. My husband and I were terrified. But the reason we were scared was because we didn’t know anything. Once I started educating myself, I realized he was going to be okay. He’s going to have a normal life. Going through that really inspired me to advocate not just for myself, but for other people who are going through the same thing. Hemophilia has really been a blessing, in a way, because I think it’s made me a better person.
Do you know an interesting individual who would like to be profiled in HemAware? E-mail: [email protected].