To be Black and gifted is a dangerous combination that this society fears. The news would have you believe that people of color, especially young Black people, are dangerous menaces to society. Here at BYP, we want to change the narrative and shine light on young, Black individuals who are helping change our society for the better. In this new Black Youth Spotlight series, our first interview is with Isaiah Austin, Baylor student and spokesperson for the Marfan Foundation.

Before his diagnosis with Marfan Syndrome, Austin was an NBA hopeful with a promising basketball career filled with free throws, playoffs, and three-pointers. After his diagnosis, everything changed. For his body, Marfan Syndrome affected his connective tissue; however, for his career and life, this diagnosis affected his future and the lives of people he never imagined helping.

Our Managing Editor, Jenn M. Jackson – who was diagnosed with Marfan’s at thirteen, spoke with Austin to discuss Marfan’s, working in the community, and how he changed since his diagnosis.

Jenn Jackson: So the first question has some bearing with what’s been going on with you. We were introduced to you last year when your NBA aspirations were stunted after you found out that you had Marfan Syndrome. Can you give me an idea about how the diagnosis has impacted you since then? What have you been doing in the community to raise awareness? What kind of work would you like our readers to know about?

Isaiah Austin: I mean it’s been a crazy ride so far. I’ve been able to meet and connect with a lot of different families and people that I never thought I would have the chance to do so. Right now, I’m back in school finishing up my degree. I also started up my own foundation to help raise the awareness of Marfan syndrome.. I do a lot of speaking engagements in order to speak about Marfan Syndrome and not only share my own personal stories but also try to encourage people to push through any obstacle they are facing.

JJ:  Very good. I don’t know whether you’ve heard about Black Youth Project but the target is youth and adults between the ages of 18-35. This is a group that usually doesn’t consider how congenital diseases might affect their communities. In particular as millennials we’re known to not have awareness for these types of health issues.  What do you think you have learned about these issues affecting the communities you have addressed through the Marfan Foundation and your personal foundation? Also, what are some good pieces of advice the readers of BYP can take away from your experience?

IA: Whether it’s at the personal or community level, it’s about knowing yourself. With Marfan Syndrome, you definitely have to know the symptoms.  It is a serious diagnosis, and if you’re diagnosed with it, you can live a long and plentiful life if it’s detected early.  The importance of knowing the symptoms is one of the many things I have learned while working with the foundation and going to the family conferences.  There, they stress knowing the signs and knowing that you can live a happy and healthy life if you’re a person with Marfan Syndrome.  

IA: Sometimes, the way you have to go about day-to-day things is different.  You can’t strain yourself like other people do in the weight room. You have to watch your eating habits—like my diet is one of the things that I’ve changed. My doctor told me that I was consuming too much sodium so I am cutting down so that my blood pressure stays low. What I’m stressing is the importance of knowing yourself and your body.

JJ:  My last question is about what you’ve done since your diagnosis. You’ve been able to stay present while you’re getting your degree and so forth, and in a lot of ways, you’ve become the face of the Marfan Foundation. It’s obviously a new course because the original goal was to join the NBA, but because of the disease that didn’t work out. You’re familiar with successfully taking on new obstacles. Specifically for Black youth, what kind of advice can you give them about facing obstacles where they had a goal or aspiration but it just didn’t pan out, and they just have to change the course?

IA: I would really say keep your faith in God.  My faith has been the main thing, which helped me persevere through all of my problems and obstacles I have faced in life.  I trusted in the plans that He has for my life and I knew that with Him, I would be able to accomplish anything I put my mind to. After I found out about my diagnosis, I prayed to God to help me dream again, and you can see from the outcome that He has opened up an unlimited amount of doors to continue on in life. I’ve been able to have a positive impact on the people around me and also the people who don’t even know me and heard my story from miles away.  I say, keep your faith in God and keep a positive attitude.  You’re not going to get anywhere if you stay down on yourself.  Always hold your head high and use your number one supporter.

 

To learn more about Marfan Syndrome and knowing the symptoms, visit Marfan.org.

 

Photo: Courtesy of the Marfan Foundation

 

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