Marfan Syndrome

As a child, I was tall, thin, and under-weight.  I had to start wearing glasses at the age of 6.  All of that combined, left me open to a lot of teasing.  My school “friends” called me  Skinny, Four Eyes, Giraffe.  You name it.  You might say that my health was fairly normal, even though it seemed that I always was in touch with the family doctor.   During my childhood I was bitten by an insect, contracted encephalitis and was in a coma for about a week.  I was anemic  for about a year and had to take shots twice a week, alternating hips each time.  I had a sore butt most of the time.  I started smoking when I was 16 years of age.

Then at the age of 21 I enlisted in the Air Force.  I was 6’1″ tall and weighed only 119 pounds.  As scrawny as I looked the Air Force found me fit for duty.  In September of 1955 I went to Sampson AFB at Geneva, New York, for my basic training.  Two days after my arrival my unit was double-timing through a thunderstorm.  I got soaked and came down with pneumonia.  I was hospitalized for two weeks.  Two weeks after that I had a relapse and was in for three more weeks.  Then there was third time.  In all it took me five months to go through 10 weeks of boot camp.  One good thing came out of that experience.  That good Air Force chow fattened me up and I weighed 139 pounds when I put on my first stripe.

Fast forward to October of 1961.  I was still smoking, plus I was pretty active playing the saxophone.  See my “About Me” page for details.   My duty job was chief cashier at Karamursel Air Force Base overseas in the northwestern part of Turkey.  I was sitting in my “cage” when I experienced a twinge in my chest.  Thinking it was just minor cigarette twitch, I ignored it……….until I stood up and started to walk.  I immediately felt like had walked a mile.  At the infirmary x-rays confirmed that my right lung had collapsed.

Because of a lack of proper equipment to treat it, I was medi-vacced to Wiesbaden, Gemany, by way of Athens, Greece, and Tripoli, North Africa.  A lengthy trip to spend lying on a stretcher.  In Germany I went into surgery immediately, and an Air Force surgeon inserted a tube the size of my thumb.  After it’s removal several days later, I was then sent back to Turkey, the same route in reverse.  I continued smoking.   Not a good decision.

Fast forward again to June 1962.  I am playing the saxophone with the Leonard King Orchestra in the ballroom of the Cactus Hotel in San Angelo, Texas.  By then I had been re-assigned to Goodfellow AFB in this city.  After a cigarette break, we came back on the bandstand.  I started to play and felt my lung collapse.  I went into denial, and played three more songs before I realized it was useless to go on.  I then said to myself, “Zeller, you have had one too many cigarettes”.  From that moment on, I have never lit up another one.

Goodfellow AFB also lacked the proper setting to do the necessary repairs.  I was transfered by ambulance to Wilford Hall, the Air Force Medical Center in San Antonio, Texas.  At that time, Marfan Syndrome was pretty much unheard of, so a team of doctors started testing and investingating.  They wanted to know why my lungs failed for no apparent reason.

It took them three months, but in September of 1962 they announced that I had Marfan Syndrome, and they gave me a medical discharge.  It is a disease about the deterioration of the body’s connective tissues.  You know, the things that hold everything together.   It is a genetic disease.  In other words it is an inherited thing.  There is no cure.  It is not contagious or anything like that.  Also, it is not necessarily fatal, if treated properly.  In retrospect I think my mother had the genes and I inherited them from her.  I think that I should mention here that,  there was little know about the disease back then.

In 1982 when I became aware of the National Marfan Foundation, they informed me that t that time, there were fewer than 2,000 confirmed cases in the U.S.  Furthermore, there were only two doctors that were experts on the disease in the state of Texas.  One was a Doctor Brian Mohr in Midland, and the other was in Houston.  I opted to go to Midland as it was closer to San Angelo.

It is said that Abraham Lincoln suffered from it.  On January 24, 1986, a professional volleyball player by the name of Flo Hyman collapsed during a match in Japan.  Her aorta had burst.  It was discovered that she had Marfan Syndrome, but didn’t know it.  She was very tall, slender, round-shouldered and exhibited all the classic symptoms of Marfans Syndrome.  By that time, there was more awareness of the disease, and it is now estimated that 1 in 5000 people are afflicted

The symptons that I have are:  Tall, thin, round-shouldered, curvature of the spine (scoliosis), and double-jointed. I can do weird things with my arms and fingers.  Also, the roof of my mouth is abnormally high, and my arms and fingers have extra length.  Plus, of course, the periodic collapsed lungs (spontaneous pneumothorax), and the near-sightedness.  Weakening of the aorta is one of the symptons. and the most dangerous.

I take a daily beta-blocker to slow my system.  Doing that takes the pressure off my aorta.  If the aorta weakens, there is a danger of an aneurism, and if one bursts, my memory banks and everything else is deleted immediately, if you know what I mean.  I personally think that my years of blowing the saxophone contributed to the strength of my system, or I might be in worse shape.

But with daily meds and monitoring of my aorta by an echocardiagram, I should continue to live out a healthy and useful life.  I am now 78 years old.  I feel blessed with what I have.  I realize that I am one of the lucky ones. that there are people with Marfan Syndrome that are far worse than me.  But also there are thousands more, that are probably unaware that they may have it.

I wanted to post this page so people can be aware of this disease that can be very debilitating.  More information can be got from the National Marfans Foundation.  If anyone feels that they have several of these symptons, I urge them to contact the Foundation at www.marfan.org.  Mailing address is 22 Manhasset Ave, Port Washington, NY 11015.  Help Center 1-800-862-7326.  E-mail: staff@marfan.org.