Living with Marfan's Syndrome

Refreshing My Memory

2011-09-20T13:29:00.000+08:00

It has been three years or so since I had my eye and heart surgeries. A lot has happened in those four years, and my life direction has changed.

When I was in elementary and high school, before I had my eye and heart surgeries and before I even knew I had Marfan’s Syndrome, I noticed that I easily got tired playing with my cousins and in some of my activities at school. I remember my struggles in high school military training – although I accomplished the training, sometimes I felt like I was climbing Mount Everest! My vision was also bad, but, because we lived in the countryside and had very little medical treatment available, I just had second-hand glasses.

Then I went to the city for college, and during my first year we discovered I had Marfan’s. My eyesight had became so bad that my aunt and uncle asked me to find the best eye doctor available and get prescription glasses. We were all startled and confused when the eye doctor said I had “dislocated lenses,” but my uncle went to his computer right away and did some research.

He realized that the dislocated lenses and my tall, thin build and long arms and fingers indicated I had Marfan’s.The website of the US National Marfan Foundation taught us a lot, and my uncle had me go to a heart doctor.This led to my heart surgery and a wonderful improvement in my strength and stamina.

I still have to be careful and avoid contact sports, but I was able to complete my college PE courses. I explained my situation to the instructors, and they were able to accommodate me in the contact sports by having me do special activities such as scoring. But I have had some great adventures with my family such as snorkeling, caving, hiking, and white-water rafting, something CDO is famous for! We were able to obtain a heart-rate monitoring wristwatch so I can always check my heart rate, especially during hiking.

So now I asked myself, “What more could I ask for?” Yeah, I have the condition known as Marfan’s Syndrome, but I can still enjoy the wonders of the world around me! For me, I think it is just a matter of choosing whether I want to be stuck in a life worrying about my condition or facing my life with a happy heart, accepting both the things I can do as well as the things I cannot do. Thinking about it, we each have to make the same choice in life!

Those with Marfan’s (sometimes we call ourselves “Marfs”) usually look different from those around us. Marfs are usually taller and leaner, and often have long arms, legs, and fingers. But being one-of-a-kind is not easy. People sometimes judge us by our physical differences rather than who or what we really are. But because I am the type of person who is always determined to face whatever challenges come my way, I always start each day with great passion, doing the best I can and not quitting. I have faith in God and I believe He has a better plan for me than I have for myself.

I believe life is wonderful despite all the down parts and, as the years have passed, God has shown me, one step at a time, the reason He chose me to have this condition instead of my neighbor. I believe He knows me better than I know myself, and He has trusted me to be the strongest among others, if not physically, then spiritually.

I believe we each must enjoy every day God gives us. As Master Oogway explains in the movie Kung Fu Panda:

“Yesterday is History,
Tomorrow is a Mystery,
But Today is a Gift.
That is why it is called the Present!”

Finally I'm Back

2011-09-14T01:25:00.001+08:00

Hi everyone if you happen to bump into my blog, it’s been a long… long… time already that I haven’t able to post, for some reason.

Years past so quick but still here I’am facing the world despite of my situation. Having this Marfan Syndrom is not easy, but in my case I’m so thankful to GOD, for giving me a second chance in life.

Please feel free to post any questions or visit me in my facebook, or email me and I’ll be glad to share my extra ordinary experience in life in dealing with Marfan Syndrom. Add or visits me in the following website.

Email & Facebook: cindy_linker17@sbcglobal.net

God Rides a Jeepney

2009-12-06T13:55:00.002+08:00

Last Sunday, after my cousin Marilyn and I went to church, we went to Gaisano Mall to buy my meds and some stuff for here at home. After we finished at the mall, we walked to the park near Gaisano to wait for a Bayabas jeepney.

Before too long, here comes a Bayabas jeep, and the helper was shouting “Bayabas,” and we saw this old man, with very ragged clothing and no slippers, trying to ask favor from the jeepney helper, that he would like a free ride to Bayabas. But the jeepney helper refused the guy, and the same happened with the second and third Bayabas jeepneys. They never let him ride. To me, he was not like the others, he just seemed to be a traveler.

Marilyn and I just observed the guy, letting all our jeeps pass by. We waited to see if that old man could ride. We talked to a lady, a vendor, and even she felt sorry for the old man, because he had been standing there for a long time already. All the drivers refused to give him a ride. I could see that the vendor was also concerned for the old guy. Inside my heart, I just had some strange feeling to help a person who needed a small thing. Marilyn and I talked about it and decided to pay the fare for the old man.

Then I had a strange thought and shared it with the lady vendor and with Marilyn. What if, just only what if, that guy was God, and He was just asking for a very simple thing, not too much. And He was seeing that people cannot open their hearts, even for doing a very simple thing for some other person. The lady vendor agreed with what I said.

So I paid for his fare. Seven pisos won’t hurt somebody's pocket!

Some believe there are angels among us, messengers from God. Others believe that God, once in a while, gives us each the chance to be His angel and it is up to us to do His will, to do what He wants us to do. - Precy

Memories

2009-11-29T22:53:00.004+08:00

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 strong tradition of individuals having their own “stores,” often no more than a pushcart or a stall at a local market or a booth along a street or road. When she was only in her teens, younger than I am now, Ate had her own little store, selling soda and cigarettes and gasoline in old soda bottles. Her dream is for our store to provide a living for us.

Tending her store reminded me of a wonderful time of my youth, when I would help my mom sell vegetables from her booth in the public market of Malaybalay, in Bukidnon. We would sleep at night under the table which held our vegetables. The heat was torrid, and we would hope it wouldn’t rain. Early in the morning, the farmers would come down from the mountains to sell their produce to the vendors, then they would buy what they needed and head back to their farms.

The local people would shop during the day, and I would always look out for “Americans” (every non-Asian was an “American”) and I would chase them down and practice my English on them. The few years my mom had that store were some of the most memorable of my life. There was joy in my heart that I cannot express! Good memories!

A lot of my childhood was memorable, but not in a good way. My parents were always poor. About the time I was born, my mom was a maid. She cleaned, did the laundry and ironed, cooked, and cleaned the dishes. Her boss wouldn’t let her eat the leftover food; there was “special” food for the maid! When I was born, the boss let my parents clean out the goat-pen and live there. Later, when my mom was having some success with her store, that lady would often come to my mom and ask for “loans!”

My mom was smart and had a six-grade education – pretty good for the central highlands of Mindanao – but she was always hindered and in pain from her bent spine, which we now know was the result of Marfan’s Syndrome. My father had no formal education, no real skills other than catching cobras and other snakes for resale, and he was afflicted with a condition far, far worse than Marfan’s – alcoholism. Whenever he had any money, or whenever he could get drinks from his friends, he would get drunk – vicious, mean drunk. Then he’d grab a bolo and everyone would get out of his way. My Ate in California and her husband, my Uncle Joe, helped us financially and also sent us boxes of gifts – wonderful gifts! Books, clothes, tools – eventually, my father would sell or pawn everything and buy alcohol.

Almost every holiday or fiesta I can remember, my dad would get drunk, and my mom and I would end up running into the trees to spend the night. The last time he attacked me was the summer after my first year at college. He ran at me with his bolo raised, screaming that if he killed me, Ate wouldn’t waste her money on me and my education but would just give it to him. My cousin saw the attack and pushed me out of the way but knocked out my breath. I never went back to our house.

A Change of Direction

2009-11-16T20:51:00.005+08:00

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 Foundation (http://www.marfan.org/), I had to restrict my activities. The rule is: No contact sports and no sports where I would be hit in the chest or head. So I can shoot baskets, but my cousins can’t pass to me. In volleyball, instead of spiking, I am the scorer, watching my short little classmates scramble around after a ball that sometimes seems bigger than they are. And I remember the time my uncle from California was playing “catch” with my cousins, throwing a tennis ball back and forth. I was hurrying for school, and I knew he wouldn’t let anyone throw to me even if I had time to play, so I was a little angry when he had one of my cousins hand me the ball and told me to throw it to him. Books in one hand, uniform skirt flying, I threw that ball at him just like I had thrown rocks at my cousin and other pests when I was little. He managed to catch it, but I saw his eyes get big! Later, he told me he wished I could play, because I could really throw.

But these restrictions on activity are just nuisances compared to what happened at school two weeks ago.

I had been planning on a career as a nurse ever since I was 14 or 15. I liked the idea of helping people, it seemed to be a way to someday earn a good living for myself and my family, and I really liked the “blood-and-broken-bones” part! I am the one who treats every accident in our 3-family household, I am the one who takes the injured to Madonna Hospital (The ER staff know me by name!) and I am the one who administers the meds. I like the clinical work so much that my uncle once said that I would make a good “cut-man” for Manny Pacquiao!

But, 2 weeks ago, the direction of my life changed. The Dean of the School of Nursing told me I couldn’t continue due to my Marfan’s. The Dean felt I wasn’t strong enough, and that also it was too dangerous to let me be exposed to the various diseases walking into the ER. She made the point that, although I’d really like to work in the post-natal unit, student nurses train in every department, including those requiring heavy lifting and exposure to infectious diseases. She agreed to let me come back the next day with counter-arguments before she made her final decision. At the final meeting I argued that I was at least as strong as some of my smaller classmates, and there was nothing wrong with my immune system, but she wouldn’t change her mind. So now I am a Psych major.

My mother was actually relieved. So was my cardiologist. My uncle was supportive. He wrote, “Dear Precy, I know this afternoon and tomorrow, when you are meeting with the Dean who will decide your future, that you will be worried and be under stress. I ask you to not be worried. You and I have each done our best...there is no more we can do, other than you speaking in the meeting tomorrow. We must believe that the decision tomorrow is God's decision, not the Dean’s. We may think that nursing is God's plan for you, and we may wish that it is God's plan for you, but only God knows His actual plan.

“If God closes this door, He will open another door, and I will proudly walk with you through that other door!

“So, when you pray tonight, perhaps do not ask God to allow you to continue nursing. Instead, ask God to have the Dean make an honest evaluation and make her decision according to God's will, and give us all the strength to accept that decision and to always seek God's path in our lives.

“Know that we are by your side forever. Love, Your very proud Uncle Joe”

Actually, Psych might be a fun major. I liked the one course I took my first year, and my uncle pointed out that I have enough abnormal behavior in my own family for a PhD thesis. That would be funny if it weren’t so true. I have to close this and study now. We have to prepare for a “Patient/Therapist” exercise in Abnormal Psych class. I get to be a “patient.” Easy. All I have to do is figure out which of my weird relatives to act like!

Learn about Marfan's Syndrome

2009-11-08T00:07:00.001+08:00

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 a visit to the eye doctor, and his diagnosis of dislocated lenses, that led to our realization that I had Marfan's. Second, the eye is often more oval, or egg-shaped, than non-Marfan eyes. This not only aggravates the vision problem, it can also lead to detached retinas and blindness.

But the big problem with Marfan's is that very often the heart and aorta are affected. Specifically, the mytral valve and aortic valve are deformed and leak (regurgitate), causing an audible murmur (honestly, mine sounded almost like a toilet flushing!) and the left ventricle will enlarge, or balloon, eventually stretching dangerously thin. The aorta is an even greater problem. It tends to stretch, and it can eventually have tears and leaks. This is called aortic dissection and, if not treated very quickly and properly, will lead to death. Aortic dissection can be due to causes besides Marfan's. First Gentleman Jose Arroyo suffered aortic dissection in April, 2007, and the news report of his successful treatment at St Luke's in Manila led to my treatment there one year later.

But if you have Marfan's, you don't need to just give up - medical science has progressed a lot in just the last ten years, and a lot of the complications of Marfan's are preventable or treatable. My uncle has documented my treatment in Marfan Story which he recently published on the web in order to bring attention to Marfan's Syndrome.

And, as he points out in his story, for the best information about the syndrome, as well as how to recognize it through its features, visit the website of the US National Marfan Foundation (NMF).

Through my uncle's eyes...

2009-11-07T23:49:00.000+08:00

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 Marfan Experience - First Post

2009-11-07T23:30:00.001+08:00

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