 |
|
|
|
|
 |
Question: Should I tell my friends about my diagnosis? How? Teen Advice: Of course. If they’re your real friends, it won’t matter. It’ll be like telling them what your favorite color is. If you’re confident with yourself, then people will see that. –Maria Sure! If they seem curious about it, then of course tell them! The more people who know about Marfan, the more people who can be diagnosed. When you tell them, make it sound like it’s just a part of a normal life and you don’t mind it. Otherwise they might feel sorry for you and treat you differently. I love telling people about it because it gives me a chance to teach others and in turn I usually learn something. And it’s important to remember that it is not something that you should tell everybody, but you also shouldn’t hide it. –Saffra Depends on your personality. It's hard to bring up because you can't be like "hey I have marfan syndrome".. Awkward silence ensued. Someone may ask why you're extremely skinny yet eat more then they do.. That is a PERFECT time to let someone know. But that's more for guys since we are more casual (stereotypically) about food and our metabolism. As for yourself, let it flow naturally through the tangents of conversation. –Robbie Yes, you should tell your friends about your diagnosis because if something bad happens they would know how to react. I tell my friends that I have a heart problem and if I faint get help fast because it could be bad. –Peter
New Social Question: How do you deal with the start of the new school year, new teachers, new school sometimes, new classmates?
Social Q + A: Archive Question: How do you deal with the fact that you can’t play certain sports anymore?
Teen Advice: I adjust depending on the level of the condition; some Marfs are allowed to do noncontact sports, but you still need to watch your heart rate. Consult your doctor on what you can and can't do. Since I can't do judo, I draw and pro swim. Once one door closes, three more open. –Max I deal with the fact that I can't play sports by turning to music. I participate in 4 different bands at school, along with choir, and I also play guitar at local open mic nights. Music helps me express myself and let out emotions in the same way playing sports does. –Meaghan Well for me, when I was told that I couldn’t play certain sports, I was kind of devastated at first, cause all my friends used to play the sports I now wasn’t allowed to. So for a while, I was really bummed and didn’t know what to do. After a while though, I realised it wasn’t getting me anywhere so I went and found something I was really passionate about and immersed myself in it. As soon as I got more accepting, I became involved in the sports again, but not playing them. –Ryan Question: Do you lack self confidence, if yes, how do you raise confidence?
Teen Advice:
Knowing that the struggles I endure are not only experienced by myself, but by many, boosts my confidence significantly. To all of the Marfs that have felt either rejected or hopeless, just remember that we are all a family and that your voice will never go unheard or unappreciated. ~ Christa
I know that from being a Marf, I've been through a lot of tough situations that normal people haven't. When my friends have problems (not necessarily medical problems) and are feeling down, they always come to me because I can give them support. Just knowing that I can help others from my own experiences really boosts my confidence. For all the Marfs lacking that, just don't be afraid to put yourself out there! Tell people about your life as a Marf, be informative. Wear your battle scars and "tiger stripes" with pride! Others will look up to you for your positive attitude. ~ Meaghan
What boosts my confidence is reassurance from other teens , support from other teens, communication, talking w/ other teens and knowing others know what you're going through. My advice to others is to communicate with other teens and find music that inspires. Music is the cure. ~ Daniel
Question:
When you can't participate, what do you do during PE/gym class? Teen Advice: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?
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
|
