WORKS CITED “Aortic Dissection.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 6 Aug. 2021, https://www.mayoclinic.org/diseases-conditions/aortic-dissection/symptoms-causes/syc-20369496. “FBN1 Gene: Medlineplus Genetics.” MedlinePlus, U.S. National Library of Medicine, 18 Aug. 2020, https://medlineplus.gov/ genetics/gene/fbn1/#:~:text=The%20 FBN1%20gene%20provides%20instructions,in%20the%20spaces%20between%20 cells. “The Importance of Human Connection.” CMHA National, 17 Dec. 2021, https:// cmha.ca/the-importance-of-human-connection/#:~:text=Social%20connection%20 can%20lower%20anxiety,a%20time%20 of%20true%20disconnection. Nath, Christy. Interview. Conducted by Quinn Aaronson. 2 March 2022. Nath, Rahil. Interview. Conducted by Quinn Aaronson. 21 April, 2022.
THE MARFAN FOUNDATION marfan.org
Just because you have Marfan Syndrome, does not mean you are alone on your journey. The Marfan Foundation is a non-profit organization established in order to raise awareness as well as promote research on treatment of Marfan Syndrome and other connective tissue dissorders. Even if you don’t have Marfan Syndrome, there are many ways you can get involved to show your support. The Marfan Foundation has many events and ways to connect with the community, including the Walk for Victory which are happening now all over the US. Christy is hosting her own Walk team (Marfan Managed) for her Walk for Victory, if you wish to support her team, feel free to purchase stickers in which all the funds go towards the Marfan Foundation. https://wokeface.com/collections/featured-products/products/marfan-managed-fundraiser-sticker
MARFAN SYNDROME An Invisible Illness
Quinn Aaronson
MEET CHRISTY
Christy Nath and her partner Rahil Nath enjoy spending time engulfed in the world of technology. Having their own separate Nintendo switches and a shared PS5, they game together, enjoying games like Splatoon 2 and Mario Kart 8 Deluxe. Rahil, who codes for a living working in the tech industry, loves learning about the mechanics of the games he plays. Christy uses gaming as somewhat of an escape. From anyone’s point of view, Christy’s life seems ideal, however Christy suffers from an invisible illness.
WHAT IS MARFAN SYNDROME? Marfan Syndrome is when connective tissue, usually leading to the heart is missing a really important gene called the fibrillin gene. Through the fibrillin gene, fibers are made to support nerves and important organs. Without this gene, it puts people’s organs in danger, which can be life threatening.
NOTICABLE FEATURES LONG SKINNY FINGERS People with Marfan Syndrome usually are very slender and tall, which includes their slender and long fingers.
FLAT FEET Flat feet is when there is a lower arch in your foot, which can lead to foot pain in the heel or arch area.
STRETCH MARKS Stretch marks are specifically a sign when they aren’t explained by weight loss.
SCOLIOSIS Although Scoliosis doesn’t always mean that you have Marfan Syndrome, if you have Marfan Syndrome, you most likely have Scoliosis.
WHAT CAN MARFAN SYNDROME CAUSE?
Due to the Fibrillin gene being gone, the aorta (the connective tissue leading to the heart) is more vulnerable. Things like aortic dissections are more common in people with Marfan Syndrome. An aortic dissection is when a tear occurs in the inner layers of the aorta which causes blood to rush to the tear which causes the inner layers to split. An aortic dissection can often lead to emergency open heart surgery, especially in those who didn’t know they had Marfan Syndrome. Christy had to have multiple open heart surgeries to mend the damaged that already occured on her aorta.