Real Life Story #5- Rikard’s Life With Marfan Syndrome

Rikard’s Life With Marfan Syndrome

My name is Rikard and I have Marfans Syndrome.  Despite that, I consider myself quite fortunate in my situation.  I am 24 years old.  I study to become a lawyer and go to regular doctor check-ups, both of which are free.  (I’m a Swede living in Sweden.)  I exercise several times a week, maintain a healthy diet and generally manage the complications from my diagnosis.  If all else fails, I have friends and family who look out for me and know about the symptoms of my disease and side-effects of my medication.  All in all, I suppose I am quite lucky.  Unfortunately my father wasn’t.

The first complications started before my birth so I only have second-hand accounts of the story, but here goes: While my mother was pregnant with me, my father suddenly collapsed at home.  No one had ever considered that he might have a genetic disease.  His aorta had burst and he needed to be rushed to a hospital.  The doctors told my mother then and there that he would not make it, the damage was simply too severe.  Despite the odds my father did survive, but the ordeal left him paralysed on his left side, almost unable to speak, walk, work or take care of himself.  My parents lived together under these new circumstances for some time, but after several years the burden became to big for both of them.  They separated, me and my siblings moved in with my mother.

And so our lives were burdened by Marfans Syndrome from the very start.  I got the diagnosis when I was 8 and began with medication shortly after.  We visited my father several times a week and saw what a difficult life he was living, the pain he was in.  Not just the physical pain caused by the disease but also the emotional pain of being brought down in life just when everything was looking so great.  However, it would take me a few more years to fully grasp the gravity of the situation.

It was not uncommon for my father to make emergency visits to the hospital.  Throughout my life, he was rushed in with blood clots or after slipping and falling in the apartment.  So as far as I can remember, it was nothing unusual when he was unable to attend my 13th birthday.  This time it turned out far worse though, his condition never stabilized.  Less than two weeks later he was dead.

So here I am, more than a decade later, still trying to make sense of it all.  Of course, doctors keeps telling me that I’m healthy, that my condition looks stable.  They tell me that people with Marfans Syndrome can live normal lives without the fear of crippling pain or death, that it only happens to a fraction of the people with the disease.  Whenever they say that however, I remember that my father was one such person.

For as far as I can remember, my father struggled with everyday life.  The stories of the witty, successful journalist that he was prior to the disease are just that, stories.  Now that I am older and getting closer to the age he was when everything got turned upside down, it bothers me that I never knew him before he got sick.  At the same time, I don’t want to be bitter.  After all, I am quite fortunate in my situation.


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Additional “Real Life” Marfan Stories

Channyn’s Story

James’ Story

Jennifer’s Story

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  1. The Zippy Zebra Real Life Story #6 - Karen's Story - The Zippy Zebra — August 1, 2016 @ 7:33 pm

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