Introduction!

Hi all! My name is Anna, and I started this blog as an offshoot of my Instagram account (@marfanna20). I wanted a place to put extended versions of what I share on there. This means that some of what you read may be partially duplicated from Instagram. Because of caption character limits, these blog posts will expand on many details of my journey. My goal is to educate people about Marfan syndrome as well as create a community for those who live with this condition. I am currently a junior in college majoring in biology on the pre-medical track in hopes of one day becoming a doctor to help people like me. I was diagnosed with Marfan Syndrome when as 3 years old. I have since had 5 eye surgeries, 1 heart surgery, and countless doctors appointments with various specialists. Despite my condition, I have been able to live a very full life which has largely been possible due to early diagnosis and preventative treatments. I want to be an example to those with this condition that Marfan Syndrome does not have to hold you back from living (within inherent safety and medical precautions, of course). In the fall of 2021, I suffered an emergent retinal detachment where I temporarily lost almost all vision in my left eye. I spent the next few months recovering from the repair surgeries and regaining my vision (at least most of it). And in the fall of 2022, I spent those same months studying abroad and traveling around Europe. The fact that I am able to still live a fairly “normal” life can also feel invalidating to my experience as someone who has struggled with medical issues related to Marfan Syndrome. So many people have it so much worse than I do which sometimes makes me think I don’t deserve to be one of the voices speaking on this condition - instead, I should just suck it up. I have recently realized that there is so much power in advocacy and awareness, and that nobody’s experience can invalidate my struggles no matter how big or small. As someone who has been extremely privileged with informative doctors, early interventions, financial resources, as well as supportive family/friends, I want to use my knowledge and experience to spread awareness and to inspire others affected by Marfan Syndrome. Follow along on this page to learn more about Marfan Syndrome and my experience living with it <3