Get Answers to Teen Questions | The Marfan Foundation

Get Answers to Teen Questions

Here you can find answers to your teen-related medical, social, and fashion questions. For general Marfan syndrome and related disorders questions, click here.

Have a question that is specific to teens?

Send your question to connect@marfan.org and one of the Teen Council members can give their perspective.

Medical Questions

Is there a way to add muscle to our arms and legs so we don't look so skinny?

There is no such thing as the perfect body. Everyone has at least a couple of things about their appearance they wish they could change, such as height, weight, hair color, breast size, or musculature. You are not alone if you feel frustrated or embarassed about your body.

Certain features, such as an indented chest can be corrected through surgery. Crowded teeth can be corrected with orthodontics. You may be able to get contact lenses to replace thick glasses. Talk to your doctors about your options.

Some physical aspects of Marfan syndrome and related disorders are not easily changed. For some people, being thin is not something likely to change. Doctors do not understand why people with Marfan syndrome have so much difficulty gaining weight. There is no special diet, dietary supplement, or weight lifting program that will add desired pounds. (Note: Weight lifting is not a safe activity for people with Marfan syndrome as it puts too much strain on the heart and aorta.) Some people with Marfan syndrome do put on more weight as they get older; therefore, it's important to have healthy eating habits now even though you main not gain any weight. There are many reasons to avoid becoming overweight as an adult, including the added stress that is placed on joints that are already fragile in Marfan syndrome.

Remember everyone wants to change something about their body.

Teen Perspective:

Use what you have to your advantage. Be proud of the way you look and embrace your so-called "flaws." It is those flaws that make you unique. Develop a style and flair all your own. -Anonymous

Don't panic! It's not as bad as you think! It's kind of reassuring to know there's a reason why you can't build muscle or why your skeleton is weird or why you are so tall. -Clare

For a long time, I felt like Marfan syndrome was a burden, hindurance that held me back, that made me stand out when I didn't want to. I came to realize that I had it completely backwards. I am different. Being different implies individuality. With Marfan syndrome came a sharp mind, determination, motivation to succeed and, most of all, a different perspective. -Matt

Social Questions

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 people with Marfan syndrome are allowed to play non-contact 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 four 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 devistated at first because all my friends 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 realized 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 accepted the situation, I became involved in the sports again, but not playing them. -Ryan

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, 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 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 could ensue. Someone may ask why you're extremely skinny, yet eat more than 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. I would let it flow naturally through 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

Fashion Questions

Do you have any fashion tips for teens with Marfan syndrome and related disorders?

The world is full of people all shapes and sizes. The same goes for people with Marfan syndrome; however, it's also clear that we do share common physical characteristics. At the top of the list are our elongated limbs and tall stature. Some may also have indentations in their chest or somewhat disproportionate figures. No matter what shape we are, we obviously demand a little more effort from the fashion industry. Luckily for us, the industry has been catching on to the fact there is indeed a profitable market for petites, talls, plus sizes, and larger shoe sizes. However, it is still somewhat frustrating when a "tall" is only a 34" inseam or when a size 14 shoe is as wide as our hips.

To download the Fashion Resources guide, click here.

In light of these predicaments, here are some fashion tips for our Marfan bodies.

Fashion Tips for Girls:

  • To elongate your torso, try wearing low-rise jeans that sit low on the hip. Also try a drop waist dress or top. This is a flattering cut that simply places the waist of a garment lower on the hips. The look originated with the 1930's flapper look and it's back in style!
  • In order to bypass the whole pant lenght dilemma completely, wear leggins for warmth with dresses and skirts, pair with boots, flats, or sandals, depending on the season.
  • Long tunic or t-shirt dresses and tops also give the illusion of a longer waist.

Fasion Tips for Boys:

  • Polo shirts and long sleeved shirts can hide a pigeon chest better than basic t-shirts.
  • Bootcut or flared jeans draw less attention to skinny legs than tapered jeans.
  • Try wearing 3/4 length shorts during the summer if you want to hide skinny legs.
  • If you are really thin like most of us with Marfan, try rocking the rocker look with skinny jeans and cool t-shirts and embrace it instead of trying to hide it!
  • Try pushing or rolling up long sleeves if they are too short.

Tips for People with Scoliosis:

  • Wear low rider pants with shirts that are looser around the waist like empire waists.
  • Have formal dresses made by a seamstress to add extra fabric to the side of the dress where you curve towards to even it out. This is often cheaper than buying a dress.

Fashionable Medic Alert Jewelry:

Please note that The Marfan Foundation does not endorse or support these companies and is not responsible for what is posted on their website.