The Marfan Blog

Linh Ngo: My Marfan Story

Posted by Linh Ngo Jul 20, 2016

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Part 1 of Linh Ngo’s Marfan story is reprinted here with permission from the author. You can read her entire four-part Marfan Tale on her blog.


Dislocated Lenses

I tap the little triangle and a robotic voice comes out: “Hello, this is the Retina Institute. We are calling to remind Linh that you have an appointment scheduled for Friday, February 5, at 3:30 in the afternoon with Dr. Kevin Blinder at 226 South Woodmill Road Suite 50 West in Chesterfield located in the West building of Saint Luke Hospital on the fifth floor. Please bring your insurance card and a current list of medications. Please note we no longer accept cash payment…” The voice sounds strangely dreamy, as if its owner was still waking up from a nap when she was reading this note into a recorder. Every time there is a piece of actual information, like my name or the date and time of the appointment, a completely awake voice jumps in and announces it. I hang up, open my calendar, and mark my next ophthalmology appointment according to the awake voice.

Seeing an ophthalmologist has been a regular part of my life since I was eight. Before then, I was an excellent first and second grader with little assistance. I was book-smart, quiet, well-behaved, my teachers’ favorite, only capable of getting A’s and A+’s. My parents had a tremendous shock when I got an F in the first test in third grade. Perhaps puberty hit early and caught them off guard, they thought. My mother sat me down for “the talk” and was immensely relieved to find out I just couldn’t see the test questions, which were written on a big blackboard in front of the classroom, and was too shy to ask. My parents celebrated the no-puberty-yet discovery and happily blamed myopia for my F. My father was then assigned to take me to an optometrist.

A simple distinction between an ophthalmologist and an optometrist: the latter does not poke you in the eyes. Not usually. My father took me to Trang Tien, which was the Optometry Street in Hanoi. (Everything in Hanoi clusters into their own street, so we have Leather Street, Fabric Street, Shoes Street, Dried Fruit Street, you name it. It is amazingly convenient.) No one can make a living from asking 8-year-old’s to read off letters of different sizes, and so most optometry offices also sell glasses. My father proudly spent a large portion of his paycheck on a pair of bottle bases that would claim a prime location on my face and bring back the A’s.

The glasses did claim my face for a whole day, but did not have a chance to bring back my A’s. My mother quickly noticed that I still could not read my books without holding them up to touch my nose. The clock on the opposite wall remained invisible to me. My vision did not change with the expensive bottle bases. The non-poking diagnosis on the Optometry Street did not work. We were going somewhere else.

“Somewhere else” was the Ophthalmology Institute, a medium-sized, overcrowded hospital specialized in all eye-related problems. There were no waiting rooms, so patients packed every open space waiting for their turn. The wait took forever. My mother and I arrived between 7 and 8 AM right after the clinic opened and the line was already long. The hallway smelled strongly of chlorine and faintly but definitely of pee. More than half of the crowd was children of all ages, with and without eye patches. By 11 AM, when Hanoi went out of its way to prove that it could get hotter and greasier, some of them were so tired they looked like very sulky pirates.

My name was called at last, sometimes after so long a wait that the dilate drops had expired and they had to dilate my eyes again. The nurse tried to tap what looked like a tiny hammer onto my pupils to measure my eye pressure. She was cranky because I could not “hold it open” and “look straight” and “hold still.” “You try, lady,” I thought, and used all the energy I had to fight against the instinct to close my eyes when the hammer came near; above it shone the bright fluorescent light.

And then there was more bright light when they looked at my lenses and my vitreous chamber and my retina. The retina is a delicate net at the back of the eye that catches light and sends a text to the brain, which in turn figures out the shape, size, colors, and distance of the object in view. The vitreous chamber is a ball full of transparent, gluey fluid that makes up the bulk of the eye. The lens is a tiny piece of living glass that can zoom in or out to collect the optimal amount of light for the retina. While my retina and vitreous chamber were healthy, there was something off with my lenses. They were not in place; in fact, they had drifted up and outward from where they were supposed to be. They could not focus correctly, and that was why I was nearsighted. That was why regular myopia glasses did not work for me: they did not account for the dislocation of my lenses. The optometrist had assumed that my lenses could not zoom in or out but were otherwise in place. It turned out that my lenses were pretty decent at zooming, they just didn’t stay at their posts.

But there was something else about the eight-year-old me, something more general than dislocated lenses. I was very tall and lanky. I was always a head taller than everyone else in my class (that was why my teachers couldn’t just let me sit in the front row — I’d block everyone). My fingers looked funny. My arms and legs looked strange. My ophthalmologist thought I might have had a rare disease, but he couldn’t be sure. “Take her to Children’s Hospital,” he told my mother, “they’re good at this stuff.”

The doctors at Children’s were indeed good at this stuff. They gave me a diagnosis: Marfan syndrome.

To read the rest of Linh’s story, please visit her blog.

Our website has more information about the diagnosis process and the eyes in Marfan syndrome.

Linh Ngo is a graduate student in Biology/Genetics at the University of Missouri, Columbia. She grew up in Hanoi, Vietnam, and came to the United States in 2011 to pursue a graduate degree. After hours, she is a science writer at Sciwalk Cafe.

Topics: Quality of Life, Marfan Community, How the Body is Affected

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