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.

Advertisements

56 thoughts on “Marfan Syndrome

  1. Hello. Can you tell me where can I go for orientation about Marfan?. Im member of a Marfan family. Some members have already died. I recently arrive to San Antonio tx and my nephew requiers follow up. He has been treated in Mexico. We dont know where to go o who contact from de NMF. I appreciate your information. Thank you

    • Hi there, glad to help. Here is contact information for the National Marfan Foundation. Address is The Marfan Foundation, 22 Manhasset Ave. New York, 11050. Web address is http://www.marfan.org. Help Center 1-800-862-7326. E-mail is staff@marfan.org.

      They help me many years ago, finding a doctor the specializes in Marfan Syndrome. Please contact them. I would try the Help Center phone number first. Ask them to mail you an information packet, too.

  2. loved reading your story! My husband had marfan’s and was not diagnosed until he was around 36 years old. We thought he had a cold that would not go away but when he could not walk from one side of the room to the other without having to stop because he could not breathe ….I knew something was wrong. I begged him to go to the er at 1am. I came home at 5am after getting the worst news. He was in conjestive heart failure. He was air lifed from New Braunfels Hospital to North East Babtist in San Antonio,TX. After a conflict with a doctor there I had him tranferred to University hospital in SA where we had a wonderful surgeon who repaired his aortic dissection and mitro valve prolapse. My husband did pass away on May,24,2004 from Marfans related issues. Our oldest son(now 18) does not have Marfans but our(now 16)year old does. He has had surgery at the age of 12 for an aortic anyuerism repair.He just went in a few months ago for a mapping and ablasion proceedure but had to be stopped because his decending aorta started to dissect.He is currently under lost of bp meds and may never to play his band instrument again. We have awesome doctors and I am greatful for that but I just hope my son has a long somewhat normal life!

  3. Hi! I came looking for a picture of a blue heron, but was drawn to your Marfan’s page when I saw it. I have a closely related genetic connective tissue disorder and I can’t help but notice your similarities. Marfanoid body, spontaneous pneumothorax, poor vision, subluxations and dislocations and general bendiness with “party tricks,” scoliosis, ages of milestones in progression, etc, etc, etc while you haven’t experienced any lens dislocations or aortic dissections. I think if you went in today that they’d most likely tell you you have Ehlers-Danlos Syndrome, but even today it’s poorly recognized or diagnosed, as are all of the heritable connective tissue disorders.

    It’s nice to see others with CTDs living life and having fun! Now to go find that blue heron picture…

    • Thank you so much, Charity, for your insightful comments. It was about 50 years ago when I was diagnosed with Marfan’s and as you inferred, they could have been very wrong about the diagnosis at that time. Anyway, as you have read, I have not let it bother me. About the Heron photos, click on this link to my Flickr photo page: http://www.flickr.com/photos/bob_zeller. I have plenty of all kinds of photos there for you to enjoy. 🙂

  4. I find it amazing how so many Marfs are gifted in the arts. My daughter has Marfan Syndrome and isn’t allowed to play sports and doesn’t even take P.E. in school. But what she can’t do physically she does with art. She loves photography, painting, drawing, singing, and acting. I find it awesome that you were in the Military and want to Thank you for your service. We have had all 3 or our sons and 1 Daughter-In-Law all in the Military. I said it is a blessing that they won’t be able to take my daughter. You are an inspiration to many.

  5. Hi Bob, thank you so much for telling your story here. God has blessed you! I loved reading your story. I love your positive outlook on life and your diagnosis. My son who is 6 right now is waiting to be diagnosed. He has a lot of the symptoms, mostly in his joints right now. I am praying he will have a blessed life as you do and not have many complications from the disease. Bless you Bob! I’m sure you will help many people with your story!

    • Thanks you, I hope everything works out positively with your son. I certainly feel blessed that I was so lucky to have things work out so good for me. Thank you for writing.

  6. I am glad I came across this site, it is always nice to hear some good stories of Marfans. I am 33 years old, 6’3″ and played basketball my entire life (even in college) until 3 years ago. At the age of 30 I was diagnosed with Marfans Syndrome and it changed my world. I had a difficult time with the diagnosis at first because I was told that I couldn’t play basketball any more and that was a huge part of who I am. Besides for being told I couldn’t play ball anymore, I was told I need to take a beta blocker get checked out regularly, and I was very scared I was going to die because of all of my research….. Fast forward to now, I am much more positive about the diagnosis, I am doing well, and I gave birth to twin boys a little over a year ago and I am doing well. I am blessed at this current time and pray that I continue to be blessed and nothing bad happens to me. I also pray my twin boys didn’t inherit the gene from me and that they can live a normal life. Thank you for your information!!! Jodie

    • Your story is similar to mine. I was 24 when I was diagnosed. My difficult time was trying to find work after getting medically discharged from the Air Force. They refused to give me any severance pay, saying that the illness wasn’t service connected. When I tried to get a job, usually I was refused because of the Marfan Syndrome. No one knew anything about it at the time, and employers were afraid to take a chance.

      But, like you, I eventually started being more positive, and started just working for myself Recently, I have had some health issues, and though not connected directly with the Marfans, it did cause issues during the care I received. I will publish an update to this post in a few days, so you can watch for it if you wish. Thank you so much for writing.

    • Thank you all so much for sharing your stories. My husband, John, has Marfan’s, as does one of our daughters, Emily. Emily is 11 years old, 5′ 7″ and weighs 82 pounds. My husband and daughter are “Marfan Perfect”. Anyone who is familiar with Marfan’s can literally spot them from a mile away. (Partly because my husband is 7′ 1″.) My husband is an Abraham Lincoln impersonator and every child in our small town knows him as the “President” from his classroom presentations in costume. In some ways, my husband has been very lucky. He comes from a large family with 7 siblings. His father passed away when he was 6, probably from an undiagnosed dissection. About half of my brother and sister-in-laws are affected in varying degrees with Marfan’s. I also have several nieces with Marfan’s. This means that we have a family community to go to for support and to share concerns. My husband has undergone two major open heart surgeries to replace his aortic value and arch. He takes his meds and now has chronic a-fib. That is no fun, but I have some good news to share. Although John is now 52, he is in better shape than he has ever been. He works out about 5 days a week and still plays basketball (of course) in the over 40 league on Monday nights. He has a successful business and is very involved in our community. We have five children, (three are John’s step-children) and our life is good. We know that Emily may some day face the same surgeries as John. We know that the odds of a dissection or aneurysm are high for John, but living with this thought makes us treasure each day we have together even more. We are continually thankful for what we have. Oddly enough, this is the reverse blessing that Marfan’s has brought to our family.

      • Sharon, thank you for sharing your story. Sometimes, after reading yours and others comments, I feel guilty. I know that sound preposperous, but even though I had the two spontaneous pneumo-thorax’s, (collapsed lungs0 those are the only two serious problems that I have had. I don’t know why I have been spared from all of these other complications, so I am indeed very lucky.

        • Guilt is a great waste of energy! I think your story and “good luck” give hope to many who live with Marfan’s. Your longevity is a great thing, but as Abraham Lincoln said, “And in the end, it’s not the years in the life, it’s the life in the years.” You put life into each day!

  7. HI Bob,
    I also have Marfans, as my son does. Like you, I have a mild case (though severe scoliosis) & my hearts is in good shape. I have it checked every yr, as well.
    You haven’t mentioned if you have children. If so, are they also effected by Marfan?

    • Hi, Doreen. I also have scoliosis and all of the other symptoms that are mentioned, but like you, my heart and everything else is in pretty good shape. We don’t have any children. I don’t know if the Marfan had anything to do with that or not. but we were unable to conceive. Thanks for writing.

  8. What a fantastic story… you are incredibly lucky, surely had someone watching over you all those years! I am a 29 year old mother of 2, and have Marfan’s Syndrome. 3 years ago, 3 days after the birth of my 2nd daughter I suffered an aortic arch dissection and was rushed into emergency surgery and was told I may not survive the surgery. My dissection went all the way down my descending aorta and in turn cut blood supply to my renal arteries. My original surgery was done in my small town in Elmira NY, but when I went into kidney failure I was life flighted to John’s Hopkins Hospital in Baltimore. Since then I’ve had 8 additional open heart surgeries and still have the descending aortic dissection. I stress again that you are incredibly lucky! Your story is an inspiration! Thank you for sharing!

    • Wow!! What an ordeal that you have been through. Yes, I do know how lucky I have been. Maybe it was meant for me to write this post, to help spread the word of what can happen. Thank you so much for sharing your experience. Believe me, your story is an inspiration, too, Tracy.

  9. Hi, thanks for your post, my 4 year old has recently been diagnosed with marfans and it feels like quite a scary world we have entered and I keep reading horror stories about it, so it’s very reassuring to read your blog about what a Normal life you have been able to lead, My daughter Sofia already has many symptoms in many body parts, at the moment the symptoms that affect her most are her sight (short sighted with dislocated lens) and the pain she gets in her hips we try to make light of it with her and talk about her ‘magic thumbs’ which she loves to show off the tricks she can do, we will continue to try to help her develop a positive attitude towards marfans and reading posts like yours are inspiring, thank you x

    • Thanks for writing, Sarah. I have had my share of fun, showing off weird things, like bending fingers backward, throwing my shoulder out of joint on command, moving one eye while keeping the other straight. I started wearing glasses when I was 5 years old, but who knows, I may have need them sooner. But I have been one of the lucky ones. And I hope your daughter, Sofia, continues to be one, too.

  10. Bob, I am so sorry that I didn’t see your blog post when it was first posted! I just got an alert about it today and am so inspired. Thank you for sharing your story to increase awareness because, as you point out, too many people who are affected don’t know it and are at risk. I’m going to share this with our Marfan community on our Facebook page! – Eileen/ National Marfan Foundation

  11. I’m so glad I found your blog – it seems we have several things in common! Not only the Michigander thing, and the love of birding, but also Marfan Syndrom. My youngest son, now 23, has Marfan. Almost everyone in our family is very short, I am only 5’2″, my husband 5’6″, both our mothers were under 5 ft tall. It’s quite interesting to have this child who is 6’3″ and skinny as a rail! (Also amazing when he stands next to his younger sister who is barely 5 ft tall!) He also has the very long “wingspan”, very long fingers and toes, concave chest, deep dimples in his shoulder blades, can bend his fingers straight backwards, etc. He goes every year to a cardiologist for an echocardiogram of his heart to check for thinning of the aoritic wall. I asked him one time if it was something he thought about a lot, and worried about, and he was so deadpan about it, acting totally unconcerned. We talked about the DNA testing, but our cardiologist discouraged it, saying the markers are constantly changing so the test is not very accurate. My close friend, her son also has Marfan and did have the test and it came back negative, so proof that the test is not definitive. People comment on his height a lot, because he is so much taller than the rest of his family, and for awhile I would explain to people, but now I just tell them it’s so handy to have someone around who can reach things down from high shelves! 🙂

    • Hi, Amy. I sorry to hear about your son. However, with taking the right precautions I would say there is nothing to worry about. He already has taken the steps to to have his aorta checked out annually. I also take a beta blocker every day to keep my pulse down a bit, to take pressure off of the aorta. Here is a link to the National Marfan Foundation: http://marfan.org/marfan/.

      There is a lot of useful information there and if you contact them have them send you a packet.

  12. My sister and father both passed from Marfan’s related aneurisms. I love that you can help educate. They were both in their 20s…they didn’t know my father had Marfans and after he passed they tested my sister and I. Thank you for your very thoughtful post.

    • Thank you so much for your comment, Nicole. I am very sorry about your father and sister. They were so young. I feel very fortunate that my case is perhaps a little lighter than most. But, I have been on meds for many years, that reduces the pressure on my aorta, and I guess that has helped me. There were so many years that most doctors didn’t know much about Marfans. When I was diagnosed there were only about two doctors int the state of Texas that were considered specialists in Marfans.

  13. Interesting Marfan description. My brother helped sponsor a Lions eyesight and glasses clinic for a small community in Northern Peru where he lives. Never had they had such a thing. One of the young ladies brought in had your physical body type. She had almost no vision. The eye doctor checking her eye sight recognized the symptoms as associated with Marfan. The elongation of the eye made vision next to impossible. Her condition meant she could not attend school, always had to have a family member with her and her education and ability to hold a job was frozen in impossible. My brother and I worked to get eye surgery for her in Lima. After the surgery, she was a different person: she has good vision now, is vivacious, energetic, goes to dances and has a boy friend. Also, her family has been freed from providing her constant assistance.
    Thanks for making me aware of how long her life span can be.

    I found your site while looking for photos of red tailed hawks. The photos are beautiful.

    • Thank you so much for writing, Brenda. I am glad that I could provide you some insight about Marfans. I have been very fortunate, myself, having a relative minor case of Marfans. I know that some people like that young lady have it much worse.
      I am glad you like my photos. I hope you return to my blog to visit.
      Bob Zeller

  14. Thanks Bob for sharing your amazing story. I’ve been encouraged to have more faith in my sons diagnosis. My son was diagnosed by 9 months old with Marfan syndrome after fighting with his first pediatrician about his lenses in his eyes shimmering or should I say jiggling like jello. There was little to no elasticity ( connective tissue) holding them down. Even his geneticist said he had nothing until I demanded a blood test. It was confirmed. My son is 3 years old now at about 45 lbs and about 5ft tall. He had surgery on both eyes to remove both lenses and can now see stable and can finally tell me that he can see things he had never seen before. It’s amazing how it feels to know my son can see now. I’ve been told this is a genetic disorder and my son is the first that I know of to have it in the family. He does take heart medication to take the pressure off aorta as well. Again, thank you for sharing. You made my day knowing my son has a chance at living a full life.
    Stacey and Jonas

    • Thank you, Statey, for writing. I am glad that your son is now making a recovery of his sight. I was fortunate. I had trouble seeing in kindergarten, but my problem was corrected with only having to wear glasses. Except for the two times my lungs each collapsed I have had no other serious problems. I hope your son continues to do well. Write anytime that wish to talk.
      Bob

  15. Thanks for sharing this page and your life with Marfan Syndrome. I learn something new every day! Ceceliag mentioned you as her blog’s resident bird watcher. I enjoy that hobby, too, here in Virginia, and it’s always fun to see the birds from different parts of the country, and around the world.

    • Yes, I spend more time birdwatching and bird photography than I do any thing else. By the way, I love your photo of the Orange-crowned Warbler. I hope you will visit my blog mor often. Thank you, Patti. 🙂

  16. Thank you so much for writing, Amanda.

    I am fortunate. There is no cure for Marfan’s, but it is not necessary fatal, as long as I take care to do the right things. I just need to not stress my aorta, or it can possibly burst, then of course, all my memory banks will be deleted. 🙂

    I know about Cystic Fibrosis. I am so glad that you are staying with us, so to speak. It is good that new treatments and tests are becoming available, and that goes for both of us.

    I try not to think of it, and just go along and thank each morning when I wake up on the green side of the sod..

    Stay in touch. I love to hear from people, expecially fellow San Angeloans.

    • I love photography because it’s something that I can do fairly easily. I am by no means a professional, just something fun.

      Do you get over to the waterlilly gardens? Do you have any suggestions of where to go for some nature photographs?

      I hope you continue to stay well. You have an amazing eye for things!

      I don’t know if this thing show you my email, but you are always welcome to email me too!

  17. You have an amazing story and life Mr. Zeller. I’m always in awe of people who take life by the horns and just enjoy every moment. I can tell that you do this in your beautiful photographs. Always a fan of nature photos, I just love to see all the wonderful things God has made in this world.

    I also have a genetic illness called cystic fibrosis. However mine is fatal. Good news is that with research and new treatments the life expectancy of someone with cf is greatly increased since I was diagnosed 28 years ago.

    All that to say, I really appreciate when people go out and see life and take it in. Stumbling upon your blog just made me giddy. Especially since you are a fellow San Angeloen!

  18. Really interesting discussion of Marfan Sndrome. I had a friend in Law School with it. He was 7’3″, round-shouldered, near-sighted and had scoliosis. He was also very bright and funny. He worked in Washington DC as a lobbyist after law school as he was politically well-connected. He collapsed on the street in Washington once with a burst aorta, but they were able to repair it, and he went on to continue to work as a lawyer and a lobbyist. His symptoms were exacerbated because of his unusual size, and he died a few years ago in his late 50’s. I’m so happy that your experience is much better. Stay healthy!! xoxox

    • Thanks for writing about this, Linda. I do feel fortunate that my case is not as devastating. I am so familiar with it, that I can spot someone with Marfans immediately. But, of course, I could never mention it to the person, but in most cases they are unaware that they have it. As far as I know, there still are no tests for it. Each of my lungs had collapsed on different occassions. I spent three months in the Air Force Wilford Hall at San Antonio. It took them that long to decide what I had. It turned out that collapsed lungs (spontaneous pneumothorax) is one of the symptons of Marfans Syndrome.

      Of course, that was back in 1962. At that time, there were only about 2,000 confirmed cases in the country. I am sure that there were thousands more but weren’t identified. There was only two doctors in the state of Texas that really was up to speed on the affliction at that time. I traveled 100 miles to Midland, Texas to see a Dr. Brian Mohr, twice a month. Now, thankfully, I have a local doctor here in San Angelo.

  19. Good morning again Bob….I just re-read your post about Marfan Syndrome. I have also done a little “google research”. After all of that I believe that you are truly blessed to have the quality of life that you enjoy….sounds like it is typically worse than your case.

    I also know that your drive and energy…and willingness to continue with your going and enjoying of life is likely a major reason you have done so well. It is awfully easy for people with any kind of debilitating problem to pull their horns in and just continually see their health and condition go downhill.

    Seems you and I have more in common than I knew…
    We are looking forward to our trip to Lajitas Bob…can’t wait.

    Have a great day Bob.

  20. Pingback: Housekeeping Again!! « Things in life I find annoying

  21. Your positive attitude is inspiring, Bob. I’m sorry to hear that you suffer from this but comforted to know that you probably appreciate life better than many of us who have health that we take for granted. You have humbled and educated me today.

    • Actually, my case is one of the lucky ones. Somehow I was seeked out to have a lesser ordeal to go through. I know some people are really incapacitated with it. Thanks for thinking of me, Cindy

      Bob

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s