It’s hard to believe that it’s been less than eight months since Isaiah Austin, the former Baylor University basketball standout was diagnosed with Marfan syndrome and had to withdraw from the NBA draft. Soon after the diagnosis, Isaiah attended our annual family conference and met so many people from our Marfan syndrome and related disorders community. Since then, he has continued to raise awareness about Marfan syndrome through activities from coast-to-coast. All while he works to complete his undergraduate degree at Baylor. We recently had an opportunity to ask him some questions about his Marfan journey so far.
What has been the most challenging adjustment you've had to make since being diagnosed with Marfan syndrome?
IA: The most challenging would probably be not being able to get up and go work out as hard as I would want. I always have to be conscious of my heart rate and breathing for precautionary reasons.
Was there anything about adjusting to Marfan syndrome that was easier than you expected?
IA: I really haven't noticed anything. I still live my life pretty much the same as before.
What are some positive changes you have encountered since your diagnosis?
IA: One thing is that I found out my diagnosis isn't severe. Hopefully, I won’t need to have surgery on my aorta for the next 15-20 years.
Note from The Marfan Foundation: Our Professional Advisory Board recommends that the aorta be evaluated every year (for example, by echocardiogram or CT scan) to ensure that it has not enlarged. When it gets to a certain size, surgery is recommended to replace the aorta before it tears or ruptures. Even an aorta that is stable in size for several years can have an increased rate of growth at any time, making the annual evaluation essential. In some cases, doctors require an evaluation of the aorta every six months.
Who do you rely on for support?
IA: I rely on my family friends and, most importantly, God for my support.
What questions are you most asked regarding your life changes?
IA: The main question I've been asked is what am I doing now with my life and where do I expect to see myself in the near future.
What support have you found from The Marfan Foundation?
IA: An amazing support group of not only board members, but also others with Marfan syndrome; they have truly showed me what it means to be a part of the MarFamily.
What questions do you still have?
IA: I really don't have many questions, but if I were to ask one it would be: does the aorta replacement surgery hurt?
What would you say to someone who just learned they have Marfan syndrome?
IA: I would tell them to trust God and to stay positive. I think that, if they can do that, then they will come out of this stronger than ever.
Do you realize the positive impact you have had on so many?
IA: Yes, I do. I thank God every day for the life he has blessed me with.
Where do you see yourself five years from now?
IA: I see myself still being active with The Marfan Foundation while still going around sharing my story with others.
Do you have insights into living with Marfan syndrome or a related disorder that you’d like to share with Isaiah? Or do you want to share with him how his efforts to raise awareness of Marfan syndrome make you feel?