College Student Raises Marfan Syndrome Awareness

Allegra Sturdevant, age 21, averages thousands of views on her TikTok videos, many of which describe her experiences with Marfan syndrome. According to an article in The Daily Universe, the Brigham Young University (BYU) student hopes to raise awareness around the rare genetic disorder.

An estimated 1 in every 5,000 people has Marfan syndrome. Allegra has been living with her diagnosis for approximately 14 years. Each year, she must visit specialists to make sure that her heart and eyes are functioning correctly. While she states that her symptoms are on the milder side, she hopes that teaching others about symptoms can help with early diagnosis and treatment. She advocates for this because she believes that early diagnosis can save lives.

Altogether, Allegra’s videos have hundreds of thousands of views. In one particular video with over 750k views, Allegra discusses Jonathan Larson, who passed away due to undiagnosed Marfan syndrome complications.

In addition to raising awareness around this condition, Allegra hopes to show people that they can still live full, happy lives. She just tells people to remember to listen to their bodies and find what works best for themselves.

Marfan Syndrome

Normally, the fibrillin-1 protein in our bodies helps our connective tissue maintain its strength and elasticity. But for people with Marfan syndrome, a genetic defect or mutation creates too much transforming growth factor beta, or TGF-β, and not enough fibrillin-1, causing health problems throughout the body. While this mutation can happen spontaneously, it is usually inherited from parents. Most commonly, this condition affects the heart, skeleton, eyes, and blood vessels. Marfan syndrome is a variable condition, which means symptoms vary in form and severity. However, some common symptoms or characteristics include:

  • A tall and slender build
  • Disproportionately long arms, legs, and fingers
  • Widely spaced eyes
  • A protruding or dipping breastbone
  • High, arched palate with crowded teeth
  • Flat feet
  • Aortic enlargement
  • Easy bruising
  • Soft, almost translucent skin
  • Chronic diarrhea
  • Stretch mark development (even in the absence of weight changes)
  • Abnormal spinal curvature
  • Heart murmurs
  • Extreme nearsightedness and other ocular complications

Learn more about Marfan syndrome.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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