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Question: How do you accommodate Marf needs at school (i.e. - rolling backpacks, use of the elevator, etc.) and balance your health needs with not drawing too much attention to yourself? Teen Advice: When I'm at school I do stick out from the crowd, being a 6"6' 140lb marf, most people will try and insult me because I am diffrent but I always turn it into a joke and get on with my day, getting the marf munchies at school is pretty tough, my school does not sell that much food so I have to wait until I get home to eat, when people always ask about my bird breast I just say I was just born that way, that I had no control how it formed, the thing that freaks people out the most is when I start showing my double joints, I think its funny to watch peoples face when they see my shoulder pop out of place then back in place, or my fingers do all kind of crazy stuff, school isnt that bad for me, mostly because I dont think it's a bad thing that I have marfan syndrome, I am glad I have marfan syndrome, it makes me unique and I get to meet all kinds of cool people. - Brooks At school we have 6 floors which means many flights of stairs... We usually have 10 minute breaks in between classes, so when I know I'm on the 4th of 5th story, while the other kids are fooling around and relaxing during break, I'll start walking to class and going up the stairs, taking my time, so I know I'm not putting too much of a strain on my heart. That way, not only do I look out for my health, but it also makes me look like a conscientious student! I accommodate another one of my marf needs by sitting upfront in class. I have pretty bad eye sight and sometimes glasses just isn't enough! I like being able to depend on myself when it comes to reading what's on the board, and not having to ask my friends if I can copy their notes instead. I think there are so many things you can do for yourself without necessarily drawing attention. Having a rolling backpack, wearing glasses, exercising carefully are all things that not only marfs, but so many other kids do too! One way of not drawing too much attention and having people treat you as they would any other person is feeling normal, good about yourself, and showing people you are proud to be doing things that are good for your body and health! -Lisa I accommodate my Marf needs by going to the library during gym class and doing my homework that period. When people ask me why I do this, I explain that I have a condition that I can aggravate with too much physical activity, and they usually understand. I also get to keep a set of textbooks at my house so I dont have to carry a lot of weight back and forth. -Meaghan New Social Question: What boosts your confidence, and what advice would you give to all the Marfs that lack it? Email responses to: teennetwork@marfan.org. Social Q + A: Archive Question: When you can't participate, what do you do during PE/gym class? Answer: Most school officials have never heard of Marfan syndrome and need basic information, which is available from the NMF. Because they do not know much about the disorder, they may be anxious about having a student with Marfan syndrome. Since it is important for people with Marfan syndrome to have physical activity, finding safe ways to participate in gym class is better than not participating at all. There are things you can do to help a school better understand how to keep gym class safe. Ask the gym teacher for a list of activities planned for the semester. Show the list to a doctor who can indicate which activities to avoid or do at a slower pace. Also, check your heart rate during gym activities and keep it below 100 beats per minute. With some creative planning and willingness of the teacher to be flexible, most students with Marfan syndrome can remain in gym class. There are federal laws that schools must follow to help students with special needs/disabilities. The special needs can be related to health problems or learning. It takes extra effort for schools to make what the law calls "reasonable accomodation" for students. Families who know the law and their rights can better advocate for needed services. You may want to print a copy of the NMF publication Phyical Education Goals for Children with Marfan Syndrome to give to your PE/gym teacher. For more information on federal laws click here. Teen Advice: If you can't actively participate in the sport, participate by cheering on and encoraging your classmates who do have to work out. It gives them motivation, and it allows you to actually do something rather than sit on the sidelines. -Callie I don't have PE, I replace it with a different class. You may want to look into this option. -Jason I have played basketball since I was in the 4th grade. I played varsity my freshman year and started varsity my sophmore and junior year. I recently went to St. Louis to get into the Marfan TRial and they told me I can't play basketball my senior year. I'm now the manager. Instead of practicing the whole nine yards, I occasionally run the plays to help our new freshman see how they should be done. I help the coach with whatever needs to be done. -Katherine Question: What do you do when your doctor doesn't know much about Marfan syndrome? Answer: There are several things you can do. Start with the NMF Clinic Directory. The Directory is a list of Marfan syndrome/related disorders clinics that are scattered around the United States. The definition of “Marfan Syndrome Clinic” varies from one medical center to another. When you select a clinic from the directory you need to ask:
If you need a diagnostic evaluation and cannot obtain a consultation at any of the clinics on the NMF Clinic Directory, expertise is more likely (but not guaranteed) to be found in the departments of Medical Genetics and Cardiology at major medical centers affiliated with medical schools. Although an echocardiogram, ordered through the medical specialty of Cardiology, is an important part of an evaluation for Marfan syndrome, the medical specialty most frequently positioned to coordinate all the specialties needed for a comprehensive diagnostic evaluation is Medical Genetics. If you already have a diagnosis, a large medical center is one place to start. Also you can interview doctors on your insurance plan to assess their Marfan syndrome/related disorders knowledge or contact an NMF volunteer in your area. They can tell you who their doctors are and if they are helpful and knowledgeable. Since Marfan syndrome is relatively rare it is not always possible to find knowledgeable doctors close to one’s home. You might consider a one-time distant consultation with a more knowledgeable doctor and bring the recommendation from the consultation to your local doctor. Even if you travel for a consultation, you will need to establish a relationship with a local doctor. Developing a relationship takes time. Your goal is to find a doctor who is willing to talk with you, accept recommendations for care from any specialty consultations you obtain, and accept the information about Marfan syndrome you can obtain from the NMF. CONTACT THE NMF'S INFORMATION RESOURCE CENTER Teen Advice: My suggestion is that you attend the annual NMF Conference; it's an unparalleled opportunity for both you and your parents to learn more about Marfan, meet others affected by it, and speak with experts in the field and ask them questions. If money is tight (chances of this are high for most families), you can try to seek a "scholarship" that will allow you to attend. You should ask doctors at the conference if there are any tests, check-ups, medicines, etc. you should be taking to discover/monitor specific situations (e.g. having an echocardiogram), or any preventive measures/lifestyle adaptations that should be made. If not, the internet is a great tool! - Callie Switch to another cardiologist who is familiar with Marfans so you can be treated with better care. Also try to find a Marfan Clinic if there is one present in your city or a location near by. - Emily Anytime I have a doctor who doesn't know a lot about Marfans I always think to myself should I leave now or just stick around for a little while longer to see if I can teach them about it. - Chester
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