The pain and joy of living with Marfan Syndrome

 Written in 2021 by Monique Voorn

My father died when I was 11 years old after three of his siblings had died in the few years before him.  By the time my father was dying, they had made the diagnosis of Marfan Syndrome. The diagnosis was a welcome discovery so that the family knew what we were dealing with. Unfortunately though the medical system was not where it is today and the ability to replace the entire aorta, so my dad died at 39.  From then on I was monitored very carefully as I exhibited the fancy Marfan skeletal features of height, flat feet, long toes and long everything else.  Although no one said it, I soon became aware that I too had Marfan Syndrome and was likely facing a similar demise.

It's been painful at times….losing people we love to Marfan Syndrome, seeing others in our family affected, going through the challenges brought on by their disease. For myself, going through open heart surgery at age 21 to repair my ascending aorta and hijacking my plans to complete my degree at the University of Guelph.  Instead I moved back to Toronto to be closer to family support and my medical team. I have encountered additional challenges since surgery including heart failure and a knock your socks off amount of extra heart beats created by arrythmias. I have always been aware of the wolf at my door and have lived my life constantly aware of my own mortality and the possibility of leaving too soon. Not to mention the pain that Marfan has created for the people who love me and worry about me.

With pain however comes growth, gratitude and immense appreciation for the good in life. I switched my focus in university from biochemistry to social work where I have been able to support thousands of people dealing with their own pain. As a result of my own health challenges,  I have developed an ability to understand fear, pain and grief and to shepherd people through their own hard times.  I am a resilient and positive woman and I possess the ability to feel immense pleasure from the simplest of things in life.  Without a doubt, the people around me have seen me through all of the challenges that Marfan Syndrome has brought me and I know not everyone is blessed in this way.  But guess what?  I am 51 years old, medically stable, happy, healthy and retiring in 4 years!!!  I never thought I would see my 50s,  let alone retirement.

In addition to my support system and medical team I have been able to learn to thrive despite Marfan Syndrome because of organizations like the Genetic Aortic Disorders Association (GADA).  They have connected me to the experts I have needed to manage my care and given me a sense of community where I don’t feel so different from others.  The health care professionals and volunteers associated with GADA help people like myself access the support and information we need in order to enjoy the best quality of life that we can living with Marfan Syndrome.