Living with Marfan's Syndrome

Last Saturday I took a day off from studying to give my mom a break and work for her at my Ate Carol’s beauty parlor. Last year, Ate Carol (“Ate” is pronounced like “Auntie” if you drop the “un” and is used as a title of respect to any female older than you) slipped and fell at a store near her home in California. She got a little insurance money and used it to build a beauty parlor here in Cagayan. I don’t think she got enough money – her back is still very painful – but the parlor is wonderful! We all work to keep it perfectly neat and clean, and business is picking up after a slow summer when people were all staying home due to the flu. Back in California last summer, Ate collected outgrown clothes from her kids and friends, bought more from the goodwill store, and shipped them here. Two weeks ago, we started selling them from a booth outside the parlor. Business is good, and the selling of the clothes is what I was doing. As in most Asian countries, here in the Philippines there is...

A Change of Direction A recent acquaintance, also a Marf (In fact, she’s the one who taught me that word – it’s a lot easier than saying “someone who has Marfan’s!), said “This is a great time to have Marfan’s!” I’m still thinking about that. I know she meant that medical science has advanced so much over the last 10 years that, with proper diagnosis and treatment, and moderate restrictions to their life-style and activities, a Marf can enjoy normal life expectancy. Two weeks ago I was taught a hard lesson about those “moderate restrictions” to life-style and activities. Until I was diagnosed with Marfan’s, I had been fairly active. I had worked in the fields, chopping weeds with a bolo (No big deal – everyone I knew cut weeds with a bolo. It’s the way farmers live in the Philippines!) and played with my classmates. Although I was thin, I was a lot taller than the other kids and I had a lot of leverage with my long arms. After learning about Marfan’s through the US National Marfan ...

Marfan's Syndrome is a genetic disorder which affects the connective tissue of the body. The weakened connective tissue can produce certain external features, which aren't all bad, and certain internal problems, which are all bad. A person with Marfan's will often be the tallest person in the family, with long arms and legs, and long, tapering fingers. The person might be described as thin, lanky, and very flexible , or "double-jointed." The person might seem a natural basketball or volleyball player. A member of the Silver Medal 1984 US Olympic Volleyball team, Flo Hyman , had Mafan's . Unfortunately, Marfan's also usually affects certain internal organs, and contact sports are not advised. The spine can be affected by Marfan's , and an untreated injury to the spine can cause a severe curvature. The eyes are usually affected, and affected in two ways. First, the lenses of the eyes are often dislocated, causing difficulty in seeing. Indeed, it was ...

My uncle has tried to help me deal with Marfan's Syndrome and he wrote notes and short stories about my experiences over the last five years. He recently combined these into one story and published it on a website for aspiring writers, scribd.com. If you want to see Marfan's through someone else's eyes, visit http://www.scribd.com/doc/21612650/Marfan-Story

My uncle suggested a blog as the best way to locate other Filipinos with Marfan's Syndrome. Although I want to do this, my studies keep me pretty busy, and I was reluctant to commit to anything too time-consuming. But when he offered to help, I ran out of excuses! My mom and I are the only two Pinoys I know who have Marfan's, but there are others. Marfan's can exhibit different symptoms in different people, and some of these symptoms will kill you if left untreated. At the very least, you can feel strange and lonely. I hope this blog will attract others with Marfan's, so that we can support each other and share information about medical providers and treatment. The next few blogs will tell a little about my own experiences as well as tell more about the syndrome and sources of information. PrecyPinoy