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Marfan Syndrome

Marfan Syndrome. By: Hannah Schulze, Rachel Bacchus, Carissa Pangilinan , Kirsten McNamara, and Cassidy Weber. My feelings (patient). I feel different and alone I find Marfan Syndrome a sign of weakness I can become frustrated easily

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Marfan Syndrome

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  1. Marfan Syndrome By: Hannah Schulze, Rachel Bacchus, Carissa Pangilinan, Kirsten McNamara, and Cassidy Weber.

  2. My feelings (patient) • I feel different and alone • I find Marfan Syndrome a sign of weakness • I can become frustrated easily • I feel sorry for my life because I can’t live a normal life • I feel guilty that I cannot complete my responsibility • I feel scared or dread or become scared of the future

  3. Feelings (continued) I am worried about school and how everyone will think of me. I wonder if my friends will still want to be with me. Will I be alone all of the time? I wish my life would go back to normal but it never will. I will have Marfan Syndrome forever. I am taller than everyone else and can’t play a lot of sports. I can still dance and swim. I am also nearsighted. Having Marfan syndrome is really hard and has a huge effect on my life.

  4. How different my life will be • I am tall and people might make fun of me. • I can reach some high things • In PE I might be treated differently and have to sit out in some activities • There is a chance I will have only mild symptoms • I am skinny so I can fit in small places

  5. How to Treat Marfan Syndrome Even though Marfan Syndrome is untreatable, There is special medicine that can increase the Lifespan. The other choice is surgery. Some people with Marfan Syndrome have to have heart surgery because the aorta is expanded.

  6. Symptoms of Marfan Syndrome(doctor) • Long fingers, toes, legs, and arms • Caved chest • Loose joints • Very tall • Long narrow face • Flat feet • Curved spine (scoliosis) • Near sighted

  7. Questions and Answers (doctor) • How do we find out more about this disorder? research and testing • What ways can we help the symptoms? avoid putting extra stress on the heart avoid sports do activities like dancing, walking, and swimming • How did the child inherit this disorder? It can be inherited by a single affected parent a child has 50% chance of inheriting it from an affected parent even if neither parent has it they can still get it from chemicals or the environment or eggs

  8. Positive Saying(Dad) • “It is ok, I lived a good life and so will you!” • “You can always get something that is too high for others.” • “You can still dance and swim, I played on a swim team.” • “You think you are different but I think you are really cool!” • “You still have really good friends that will get you through it, along with us!”

  9. Negative Sayings(mom) • “She can only do some sports!” • “She was gonna be a super star and now she is too different.” • “ Everyone is going to make fun of her.” • “Nobody likes her, she is too tall!” • “Everyone stares at her when she walks by.”

  10. How the symptoms will affect (parent) • Marfan syndrome affects your lungs and skin • Usually with Marfan Syndrome you have dislocation of either both or one eye • You have problems associated with the heart and blood vessels. • The roof of your mouth is arched which causes your teeth to be crowded • In some cases you may develop stretch marks at a young age with Marfan Syndrome

  11. Genetic research Scientist. • Research scientists are attempting to find out what happens once the genetic defect or mutation occurs in the fibrillin-1 (FBN1) gene. • Marfan syndrome research teams are searching for the Answers to these Questions. • This causes changes in many systems of the body, but especially the heart, eyes, and bones.

  12. Research teams are studying • Studying the mutated genes. • Studying large family groups affected by the disease. • Studying newly developed mouse models that carry mutations in the fibrillin-1 gene. • Conducting animal studies that are preliminary to gene therapy. • Treatment of Marfan syndrome at Mayo Clinic varies, depending on the organ systems affected. Although Marfan syndrome has no known cure, advances in medical treatments and surgery can improve patients' long-term outcomes and life spans. A team of medical specialists works closely with each Marfan syndrome patient to create an individualized treatment plan.

  13. Questions and Answers.(scientists) • Will she die at a young age? No the medicine I am working on should increase her life span thus helping her. • Is there a chance that in might not work? No if she takes her medicine everyday and takes it for a while then she would not have to take it any more. • Will this medicine help her be a runner? This medicine may help her be better at running she might have to take it slow at first because she has not ran in a while.

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