Posts tagged: Marfan Syndrome

Karen’s Inspiring Story Part 2-Life With Marfan’s

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Karen’s Inspiring Story

Life With Marfan’s

Part 2

Karen's Inpsiring Story of Life With Marfan

I was so very appreciative that I finally got to experience it.  Tree branches were no longer just green colored arms sticking out of a tree; they were suddenly branches that had beautiful vibrant individual green leaves on them.  Flowering plants weren’t just a blob of color anymore; they were a beautiful living creation from God, with their own blooms and leaves, and little bugs that crawl on their petals.

Want know what Karen is referring to?  Read the beginning of Karen’s story here.

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Karen’s Inspiring Story-Living with Marfan’s-Part 1

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Karen’s Inspiring Story

Living With Marfan’s

Part 1

Karen's Inspiring Story of Life With Marfan's

My name is Karen and I have Marfan Syndrome.

I accept my disease and am actually grateful for it.  Having Marfan’s has helped make me who I am today………and if I must say so myself, I think I’m a pretty cool person.

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

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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.Continue Reading the full Article…



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Real Life Stories #4-Awaiting Diagnosis Marfan Syndrome

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Awaiting Diagnosis

Real Life Story #4 Rachel's Marfan Journey

Hi!  My name is Rachel.

I am 14 and a freshman in high school.

I enjoy designing clothes, reading books, hanging out with friends and watching movies.  I like creating stories and drawing.

I have been diagnosed with severe scoliosis, flat feet, severe vision issues, Ehlers Danlos Syndrome Type 3, Postural Orthostatic Tachycardia Syndrome and Mast Cell Activation Syndrome.

I am currently awaiting gene testing results for Marfan Syndrome.Continue Reading the full Article…



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Real Life Stories #3-Marfan Journey

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Jennifer’s Journey

Jennifer Cross Photo

My Name is Jennifer Cross

I was born in Springfield Illinois on October 1st 1972 ( I accept birthday gifts all year =) )

I am the middle monster of 3 kids.  My brother Jeff is 47 (Marfan’s and valve replacement at 32 like my dad and ticks) and my sister Jeanine is 41 has Marfan’s and no surgeries (we are polish twins ) Most of my childhood was spent outdoors…even more when we moved to Clearwater, Florida in 1980 following my father’s valve replacement at the age of 32.  My dad was 6’4 handsome, fun, and always loved being outside so moving to Florida was ideal since shoveling snow was not a great idea for him.

I remember sitting at the dinner table, hearing a “tick” on some nights and on others nothing.  That was the sound my dad’s heart made after his surgery.  My family didn’t discuss such things as health etc.. so I just thought it made my dad even more special .

At that time little was known about what my dad had.. Marfan’s Syndrome.

I never gave it any thought..

Then I became a teenager..Continue Reading the full Article…



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