Raising the profile of a rare disorder

articleCharlottetown woman goes public with her story of living with Marfan syndrome

It took the death of her father for Kacey Lamphier to learn she was ill.

Her dad Eddie was seemingly a healthy man when he died suddenly at age 41. Tests determined he had Marfan syndrome.

With the disease being a genetic disorder of the connective tissue, his family members were all tested to see if any of them had the disorder.

Kacey, at age eight, was diagnosed with the condition that can see connective tissue in the heart, lungs, eyes and skeletal and nervous systems and other tissues stretch and weaken. So too did her uncle and her cousin receive the diagnosis of Marfan syndrome following the death of Kacey’s father.

“I was like a tall, lanky kid whose heart was growing too fast,’’ recalls Kacey, who is now 26.

Read More: The Guardian

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