Hemophilia Awareness Month – A Patient’s Perspective

March is Hemophilia Awareness Month and the IHTC developed the Thrive campaign to increase awareness throughout Indiana. Several patients were involved in the Thrive campaign and we asked one patient, DJ, about his experience and perception of the campaign’s impact.

IHTC: What was it like participating in Hemophilia Awareness month?

DJ: It was AWESOME! It’s so important that we share information and raise awareness every day, even after the month is over, because the more people who know about hemophilia, the closer we are to finding a cure. We’re also helping kids with hemophilia by making it easier for others to understand their experience!

Were you nervous to put yourself out in public and talk about having hemophilia?

I was nervous talking about it in public growing up, and a little bit in high school. But at the same time, I always wished that people knew what hemophilia was so they wouldn’t look at me like I was an alien when I’d tell them about it! Now that I’m older, I almost feel like it’s my duty to be involved and to raise awareness for the kids that feel like I did when I was growing up.

What impact did you see from the Thrive campaign and your interview with the Indianapolis Star?

I was shocked and surprised to see how many people on the street, at work, in restaurants, on Facebook, as well the Internet, responded supportively to the commercials and interviews. The outpouring of questions from people wanting to learn or get involved shows that Hemophilia Awareness Month will have an impact for years to come! I also noticed that although many people know about hemophilia, they don’t actually know the FACTS. Usually when you tell people about hemophilia, they are intrigued and want to share this information with others so that they won’t have the same misconceptions.

Anything else you’d like to share?
To anyone who has hemophilia or a blood disorder – no matter what happens, don’t stop spreading the word! Tell people about your life and the impact that your disorder has had. Together we can educate the world! Don’t be afraid of what people will say. Remember, there’s a lot of them, but only one you – so educate! I also want to recognize how the IHTC is doing so much to increase awareness about the hemophilia community. They should get a round of applause and a standing ovation! I know I speak for myself and my brother, Sean, when I say our lives wouldn’t be the same without the center!

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