What Would You Say to a Person Newly Diagnosed With Marfan Syndrome?

I was diagnosed with my rare illness at 2. I was lucky to be diagnosed at such a young age.

First and foremost, it probably saved my life, but it also saved me from knowing what life was like before a diagnosis. To me, Marfan syndrome was always known. I can’t remember a day I was unaware of my genetic disorder.

I started to wonder what it must be like for someone newly diagnosed. How unbelievably terrifying it must be to step into the Marfan world. So many unknowns, so much fear, and the fact that it feels like someone took the world you knew and shook it, sent it spinning into a whirlwind.

I could be wrong. It might not be that terrifying. It just might be a new beginning for you. A whole new world. Insert Aladdin theme song here. You may just go on your happily merry way.

My mind started working. Wondering what the outcome would be if I asked a simple question to members of a Marfan support group and my own friends and family.

This is where I would make my science teacher of a mother realize I was actually listening when she would try to explain her science lessons to me. I decided to do my own experiment to see what the outcome would be. Yes, Mother, I still will roll my eyes at you when you talk about science. It’s not my cup of tea.

The question: What would you tell someone newly diagnosed with Marfan syndrome?

“Can I do anything to help? I know some good doctors who see patients with this disorder. You should also read my daughter’s blog.” — Rolanda H. (My momma)

“My daughter has Marfan syndrome, you should talk with her.” — Tony M. (My father)

“This isn’t a death sentence. It’s a new normal.”– Tasha S.

“Tell me what this means for you and your life. How are you feeling about the diagnosis?”– Jennifer B.

“What does this mean? What can I do to make your life a little easier? You are loved, you are strong, and you have the determination to not let this define you.” — Jillian B.

“I would tell people to get connected with the Marfan Foundation as soon as possible! They’ve got the most accurate information out there, and, for those in the U.S., they provide ways to get connected with other people who have Marfan too. Along those lines, don’t be afraid to get connected to the community! It can be life-changing to spend time with people who look like you (or your kids) and understand what you’re going through!” — Maya B.

“It’s OK to mourn what might have been, but get busy on what will be. You are still the creator of your story.” — LaMonica N.

“Keep living life, and don’t make hasty decisions out of fear. Keep your happiness in mind. Doctors are smart, but they are human beings who make mistakes too. They don’t always have all the answers. There is still so much not understood about this syndrome.” — Heather A.

“What are your symptoms? How does this effect your daily life? Always remember that a diagnosis does not define you… how you respond to your diagnosis, how you live your life, how you inspire others, that’s what defines you as a person.” — Amber F.

“From a nursing perspective, I would most likely ask what you’re feelings are on your diagnosis. I would also try and suggest joining a support group. I would tell you your diagnosis only defines a disease/disorder your body has, but in no way defines who you are as a person with hopes, dreams, and aspirations.” — Aleah D.

“I was diagnosed a year ago at age 30. It was shocking and scary, but it gets easier once you get connected to the right support networks and the right physicians. If I could have given myself advice a year ago I would have said to continue to stay active as you are able and to prepare yourself to be your own advocate. I wasn’t very assertive prior to this process, often got talked over or remained quiet in all sorts of settings, but especially with physicians. Marfan syndrome is a disorder where you really need to speak up for yourself, listen to your body, and find a physician who will listen to you.” — Joanna S.

I was floored by the overwhelmingly positive answers I received. I was happy to see Marfan patients keeping their answers positive. That’s what a newly diagnosed person needs. They need your support, your kindness, and your love. They do not need your pity or your lack of empathy. I did not experience any negative in this experiment of mine.

I wish I could post every statement sent to me. It would take me hours to go through them all. The thing is, they were all positive.

I also noticed you could easily replace “Marfan syndrome” with many other disorders in each of these statements. That is amazing. The fact that so many people just want to support you no matter what disorder you have is a beautiful thing.

If you a reading this and newly diagnosed with any medical condition, reach out! I promise someone will reach back.

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Image by Gajus