The Mighty Logo

10 Common and Not-So-Common Questions I've Been Asked About Marfan Syndrome

The most helpful emails in health
Browse our free newsletters

Every once in a great while I will be given a chance to explain my rare condition. I get a chance to go into detail about my connective tissue disorder, Marfan syndrome. However, most of the time people are too polite to ask. I appreciate this politeness, but I have always lived as an open book. If you ask, I will give you an answer.

Understandably, it’s OK to wonder about this disorder and never feel comfortable asking the questions.

Here are few common and not-so-common questions I have been asked over the years.

1. Were you born with Marfan Syndrome? 

Yes. Marfan Syndrome is a genetic disorder, meaning a parent may be a carrier of the gene. In some cases (like mine) neither parent carries the gene. During conception, a mutation can occur in the FBN1 gene.

2. If you have Marfan Syndrome can you pass it to your child?

Yes. You have a 50 percent chance of passing it to each child you have. I have two children. Both have been genetically tested, and both are not carriers of the gene.

3. Aren’t you too short to have Marfan’s? Isn’t that a disease where you are really tall?

No! For the love of all things, stop asking this question! I am 5-foot-7, and that’s short in the Marfan’s world, but our genetic makeup plays a huge roll in our height. We are all different, and this disorder can affect each person differently.

4. Do you play basketball… because you are tall enough.

Contact sports and basically anything that would strain your heart should probably not be done if you have Marfan’s. As far as my basketball skills go, I can palm a basketball, and that’s about it.

5. Do you ever feel like you deserve special treatment because you have so many things wrong with you?

Yes, I have actually been asked this. Never do I ever think I should get special treatment. Do I wish some were more understanding? Of course, but shouldn’t we try to be more understanding in general towards everyone?

6. I never knew anything was wrong with you. Why don’t you talk about it more?

Honestly, I don’t want the attention. Making a blog post is easy. I am not face-to-face with anyone reading this. I am able to disconnect myself from the reader. I am too awkward of a person to talk to you about it. Unless you ask me, I will rarely bring it up myself.

7. Can I have our students/doctors/nurses listen to your heart? 

It never fails. I go to the doctor and they want others to listen to my heart, look me over, and ask me questions. If you have Marfan’s, try not to be annoyed by medical professionals constantly wanting to use you as a learning tool. To bring awareness to our condition to save lives, the need to study known cases is great. You are helping in some small way to save another’s life.

8. You poor thing, so many surgeries. Bless your heart, I bet you are a strong person, right? 

Not really, no. It’s a kind thought, but no. I am a huge wuss. I am terrified of a simple dental cleaning, and you wouldn’t think after open heart surgery the thought of a dentist wouldn’t make my skin crawl. No amount of surgeries or lack there of makes you strong or weak.

9. Do you ever feel unhappy about your condition? 

A simple enough question, but it can be tough to answer. I am not unhappy or upset I have Marfan syndrome. It can bring me down, it can make me angry, but those feelings are fleeting. I get back on the proverbial horse and push forward.

The last question is one I ask myself from time to time.

10. What would I tell someone newly diagnosed with Marfan Syndrome. 

It’s going to be OK. You are going to be just fine. I understand your fears, and they are not unrealistic. It can be challenging, but you will learn how truly amazing you are, because nothing about you has changed. You are still the same.

Image via Thinkstock.

Originally published: August 26, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home