Marfan Awareness 2016

February is Marfan Awareness Month and every year when it rolls around I think about how my awareness has changed over the years. When I was first diagnosed in 1988, (you can read an old post about my diagnosis here), my awareness was viewed through the lens of medical information. I was in nursing school so I jumped into the facts and stayed there. I was intelligent and a good student. I could study this condition like I studied everything else and make myself an expert and feel like the victor. I wanted to learn everything so I could control and manage my future. Incidentally, this was not an optimal way to cope with this diagnosis but it took me years to realize that kicking into medical mode—and operating there whenever I dealt with Marfan issues—just shoved down the emotional toll a chronic, life-threatening illness can have. Those emotions usually came out as fear and anxiety or anger. But that’s a whole other post.

If you had asked me then, I was fine. I didn’t have significant aortic dilation; I didn’t have major pain symptoms. I didn’t have any major limitations that I wanted to see because I didn’t want to be 3 years into my 4-year degree and need to re-evaluate everything. I also didn’t want to acknowledge that I felt scared and alone. I didn’t know anyone else who had Marfan syndrome. I didn’t know how to navigate the emotions when an instructor giving us information on a cardiac patient asked me, less than a week after my diagnosis…in front of my whole clinical group, if heart transplantation was a possibility for me some day. “Ummm…what?” I didn’t know how to cope when the cardiologist I saw back at home answered my question about prognosis with “well, that’s pretty hard to predict. Some people drop dead at 17, some live to be 35.” This information was inaccurate and out of date even then. But now, thanks to advances in research and care the life expectancy of people with Marfan syndrome is similar to that of the average person. But can you imagine being told that at 21? “Okay, let me just go break up with my fiancé so he can marry someone who’s not going to die young.” (Thankfully Rick wouldn’t let me walk away). I had nowhere to turn a year later when the same cardiologist told me pregnancy was too dangerous to consider. “Ok, let me go try to break up with my fiancé for the second time so he can plan a family with someone else.”

The Marfan Foundation was founded in 1981 but even in 1988 no one told me about them. Not the American Heart Association when my mom called to learn more about Marfan syndrome. Not my cardiologist. Not even my perinatologist when I became pregnant shortly after my wedding. (You can read about my pregnancy here and here.) I navigated those first years after diagnosis with loved ones who knew less than I did and who were also scared and overwhelmed. I had heard horror stories but I didn’t hear anything about the people who were living and thriving with Marfan syndrome. Which, by the way, if you know someone who was just diagnosed with any disease, please save your horror stories. Don’t tell them about your relative or your relative’s friend or your relative’s friend’s neighbor’s sister who died a horrific death. And if you go back to the late 80’s and someone you know mentions having Marfan syndrome don’t ask, “Isn’t that what Flo Hyman died from?”

In the summer of 1991 I sat down to nurse my baby girl while reading my newest copy of American Baby magazine. There was a single paragraph on a page about rare disorders that mentioned Marfan syndrome and listed the Marfan Foundation with a number you could call. Remember this was before the Internet, before blogging, before email even. So I picked up the phone and made a call while sobbing to my sister Doreen. I was crying so hard I could barely talk when she answered the phone. I finally was able to squeak out, “There’s a whole foundation. There’s a Marfan Foundation. I’m not the only one.”

I called the foundation that day, they gave me the number of a local support group contact and in a few minutes I was talking to another person with Marfan syndrome. Someone who had walked through heart surgery and pregnancy and adversity but was living! And she was about 20 years older than I was (she was still doing well last time I connected with her via Facebook a few years ago). The Foundation also gave me the name of a geneticist at University of Washington who was active with the Marfan Foundation. I left my meeting with him feeling like he gave me my life back. I was given accurate information and referred to a cardiologist who really knew about Marfan syndrome and didn’t spout off doom and gloom predictions about my short life span.

Having accurate information was a key first step to living an abundant life while operating within my limitations. Awareness is about so much more than being diagnosed. Obviously knowing the signs and getting that diagnosis saves lives, but having continued support and empowerment as you navigate the healthcare system and the maze of issues that crop up is vital.

Now there are local Marfan Support Groups, online support groups, telephone support groups, a yearly conference, Facebook Groups, even groups tailored for my specific mindset of living well after an aortic dissection…numerous ways to connect, be heard, bounce ideas around and vent to people who are living what you live. Brene Brown, one of my favorite authors, says that the two most powerful words when we’re in struggle are, “me too.” Awareness of the support that’s available and waiting, awareness of others like me, awareness of community and empathy and friendships that bloom across the country and the world, that’s the awareness that continues to change my life. That’s the other aspect of awareness that I celebrate every year during Marfan awareness month.