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.
This fall, we held the Adopt-A-School Victory Challenge to encourage parents, guardians, grandparents, and any adults to bring our teacher and school nurse resources to their local schools. We randomly selected one of the participants in the challenge as the winner of an iPad mini... and the winner was Eva Marie Seijo, of Virginia Beach, VA.
Do you still get blank stares from people when you say that you have Marfan syndrome? How many times have you been asked, “How do you spell that? M-A-R.......how frustrating!
Marfan is still is not a household word, but February is Marfan Awareness Month and there are many things you can do to help change that! Here are five:
- Ask your local library if you can set up a Marfan awareness table for a day or two and share information about Marfan syndrome with members of your community. Contact your local high school about giving a presentation to biology or genetics classes about Marfan syndrome.
- Send Valentine Day cards (or emails) to your friends and relatives and include information about Marfan syndrome and related disorders. Share some basic facts about related disorders, too, because these have overlapping signs and treatments with Marfan syndrome and can also cut lives short.
- Write a “letter to the editor” of your local paper about what Marfan syndrome is and why it matters to you, and ask them to publish the letter or do an article. Suggest they interview you about your medical journey and point them to Marfan.org for medical information.
- Share facts about Marfan syndrome and related disorders on Facebook, Twitter, and all the social media platforms you are on throughout the month of February. Check out our Facebook page and Twitter feed every day of the month for information, pictures, and videos you can share.
- Get all “doctor” on your doctor; ask him or her to check out the healthcare professionals section of our website, especially our MarfanDX diagnostic tool, which many doctors find useful for evaluating the signs of Marfan syndrome.
If you have school-aged children with Marfan syndrome or a related disorder, you know how frustrating it can be when teachers and other students don’t understand what’s going on with your child. You child may feel different and, even worse, get bullied. Teachers may want to overprotect your child or act like nothing is wrong.
Instead of getting upset, take action! This is an opportunity for education! If teachers, students, and even administrators, understand Marfan syndrome and related disorders, there is more likelihood that they will be more accepting of your child, include him or her in activities that are safe, and work with you so your child has the best academic experience.
Why did I subject myself to the torment of a half marathon along the unforgiving pavement of Lake Shore Drive? Especially since my physique now has a bit of insulation around it to protect me from the harsh Chicago winter? I'm running for Julian, and I'm running for Maya.