September 10, 2014
by marfmom


Approaching Strangers: Do You, or Don’t You?

In continuing my series on conversations we have about Marfan syndrome with our kids, today’s topic is on approaching strangers who look like they might have Marfan.

The topic comes from reader Jamie, who writes:

Once you know about Marfan, you can’t help noticing people you meet in public with great height, long fingers, obviously corrected eyesight, thin limbs, etc. The condition is not *that* rare and if you live in a populated area, the odds are good that you’ll encounter someone else with Marfan — and, you might be the only person in their lives who has learned to recognize it.

Of course, a lot of people have these traits without having Marfan. Even so, warning people seems like an ethical no-brainer since their health might be in danger without them knowing it, and the costs of ruling that possibility out seem small in comparison. On the other hand, it really *feels* wrong; health is personal, and you could be stepping into a stranger’s life in a very intimate way to add a serious health concern and possibly life-changing news to whatever else they have to worry about.

I’d be curious about others’ reactions to this situation.

I’ve only asked a stranger once. I was at a party that one of my brother’s friends was hosting. I had never met the guy before, but he was so tall I couldn’t pass up the chance to ask. I followed him into the room to get more snacks, struck up a short conversation, then said something to the effect of “hey, so this is a little weird to ask, but have you heard of Marfan syndrome? I ask because I have it, and you’re tall like me so I wondered if you might have it too,” or something like that….this was when I was pregnant with the Menininho, so it’s been a few years. He ended up not having Marfan, but he wasn’t offended that I’d brought it up, and I was glad that I’d played it safe and asked.

If you have Marfan, have you approached other people you think you might have it too? What about if you’re a sibling/parent/partner? If you are a parent, have you talked to your child about approaching strangers who fit the Marfan or a related disorder phenotype?

I wanna hold your hand

photo by:

September 8, 2014
by marfmom


Talking to Your Kids About Their Diagnosis

How to tell your child they have a particular diagnosis, whether that’s Marfan syndrome, Loeys-Dietz syndrome, autism, or something else, is a question I get frequently…multiple times while writing this post, in fact! Do you tell them in pieces, or all at once? Wait till they ask? Till they’re older? Is their diagnosis part of them, or something that they fight against?

We don’t want Marfan, or autism, to be a big deal in our house. Making them into a big deal makes them seem more scary. So, we’ve never had one Big Conversation. Instead, we’ve just talked about Marfan and autism around the house since the boys were babies, in age-appropriate ways.

For example, J knows he takes medicine. We tell him “you have something called Marfan syndrome, just like Mommy! It makes you tall and stretchy! It also can make your heart and lungs more tired, so you take medicine every day to make them stronger.” Since age 3, J’s been able to identify all his medicines by which body system they’re for, and which time of day he takes them, and he reminds me if I forget one. It’s a little part of his care that he takes pride in.

We got the Marfan syndrome A-Z book, and the Menininho in particular likes for me to point out the real-life identities of our friends and doctors in it. This book (geared towards 3-6 year olds) is actually a great way to open the door to a conversation. You can download it from The Marfan Foundation (not sure if they still have print copies). There’s also a book for older kids (like 7-11 year olds) called Marfan Does Not Mean Martian, written by an affected teen.

We talk about how Marfan makes us bendy and tall, and how much fun we have with our Marfriends. M attended the kids program at conference for the first time this summer, and asked the doctors “what problems does Marfan cause and why does it cause those problems?” I don’t know how much of the answer he understood and retained, but I’m glad he felt comfortable asking the questions.

I can’t even remember any initial conversation we had with M about being autistic. I know one happened over breakfast, where we talked about how autism gives him his good memory, and is also the reason why he is sensitive to noise and touch. Now that he’s 5.5 years old, we’ve seen the fruits of our approach pay off, in how he talks about autism to us, and to other people. M is proud to say “My daddy and me both have autism, and my mommy and J both have Marfan!” He wants to find more autism friends, since we have so many Marfriends.

The boys know that they are different, regardless of whether we’d ever said anything. Even at 3.5 years old, J realizes that his older brother doesn’t take most of the same medications that he does, and we’ve already had a conversation about activity restrictions (an upcoming post). We feel it’s important that they have a name for their differences from an early age. Having a name helps them shape an identity around that, whatever they want that identity to be. As I’ve written about before, maybe Marfan or autism will be a big part of their lives, or maybe it will be a very small part. Either is ok with us.

But, knowing what they have and what that means, particularly in the case of Marfan, is the key to managing it. So at 3, for J that’s knowing he’s got heart, lung, blood, and sleepy medicine, and a vitamin. In a few years, that’ll be knowing the proper names of his meds, and a little more about what they do. He knows his echocardiogram takes pictures of his heart, and as he gets older and asks more questions, we’ll talk more in depth. He’ll guide that conversation. By high school I was scheduling my specialist appointments, and so maybe he’ll do the same. I believe that a successful transition to adult care starts early though, and that’s a very gradual process.

How do you talk about your child’s diagnosis with them? Have you?

(video is of M leading J and some Marfriends in a “Marfan cheer” at conference)

September 4, 2014
by marfmom


Education: What’s a Person’s Responsibility?

This is a post I’ve been mulling awhile. I had a conversation awhile back, during which the question was raised whether we, as people with Marfan, have a responsibility to educate those around us. Of particular note was how we raise our affected children to address this.

Marfan syndrome causes most of us to be tall…some very tall. Kids and young adults tend to be extremely thin (for example, in middle school I was 5’10” and 90 lbs). I challenge you to find a handful of Marfs who have not had strangers comment on their bodies. I’m not sure I can even name ONE!

Now, I spend a great deal of time in various education and awareness related activities. My whole family has multiple articles of Marfan-themed clothing. We’re very open about J’s and my diagnosis and I’m passionate about educating the public. That said, I in no way believe that it’s our obligation to do so.

We didn’t ask to be born with Marfan. We didn’t ask to have physical features that distinguish us from the general population. In the United States at least (because this is not a phenomenon I experienced in Portugal this summer, where I was much taller than everyone else, or in Brasil, where I also stuck out), people seem to have the philosophy that they deserve to have access to whatever information they choose. This sense of entitlement leads to asking intrusive personal questions. You see this among all sorts of groups, including transracial adoptive families, ethnic minorities, and same-gender parented families.

Are people trying to be rude? Usually, no. But is our height, weight, hair, family makeup, etc. any of their business? No!

Most days, I’m open to politely answering people’s questions because I do realize they’re not trying to be rude and because I do believe in the importance of education. But, I don’t always feel that way and that is ok too. The questions can get exhausting! My body does not exist as a teaching tool.

I am raising J to know that how he does or does not talk about his Marfan is his business. As he gets older, he will have veto-control over what I write about him. He will decide who he tells, and how. He is under NO obligation to tell strangers who comment on his body about his diagnosis. And honestly? If they’re rude to him, he has my permission to be rude back (I’d prefer him to be polite, but we’re human and allowed to have bad days!). I think it sets a dangerous precedent to insist our children always be willing to talk about Marfan. That removes some of their ownership from their bodies and their story.

If our stories and bodies are not our own, what is?

J, proudly showing off his Marfan Foundation bracelet