Patient Comments: Marfan Syndrome - Experience

Question:

Please describe your experience with marfan syndrome. Submit Your Comment

Comment from: Alone, 13-18 Female (Caregiver) Published: January 28

I had my lumbar laminectomy done on 10/22/18. I just turned 56 in December. My surgery was a complete failure. I feel worse now than ever. Not, sleeping, and out of work ever since. I wound up back into surgery a week later due to a hematoma. I told the nurses that something was wrong. They released me anyway saying that my insurance company wasn't going to cover another day. I was furious. I'm still furious. I wonder if there is anything I can do about it.

Comment from: OsteoMan, 55-64 Male (Patient) Published: January 03

I was told at age 11 or 12 I had Marfan syndrome. This disease attacked my discs in my back. Almost every disc is bulging. I have had to have surgery on a couple. Twice I have pulled all my ribs out of place. The only way I could breathe was having my ribs wrapped really tight. They say they want to wrap my aorta with tape. I had to drop my health insurance because of the cost and I make too much on Social Security for Medicaid. But I am 56. I feel sorry for the poor young children who get this and die young. Like the lady with the 18 year old. My heart aches for these children. I would change places with them if I could. This disease is so very sad. I am sorry for all who have it.

Comment from: paul, 55-64 Male (Patient) Published: December 27

I'm 59 years old and I found out I had Marfan syndrome when I was 20. I didn’t let that stop me, I partied hard, played top grade basketball for years, had a family, and was a truck driver, but I always got my heart and eyes checked every 2 years. They are still okay but I now suffer from fatigue and severe pain in my joints so I can't drive trucks anymore, so I turned to acting and have been in movies and music clips. So I guess what I am saying is to do what you can do until you can’t, then do something else. Just keep doing, if you stop it wins.

Comment from: curlybill, 55-64 Male (Patient) Published: April 16

I needed abdominal surgery in 2012, I had it done arthroscopic at which time they inflated my abdominal cavity with air. It seems my connective tissue let the air travel between my fat layer and muscle on my whole torso up to my shoulders and remained inflated for about a week. I somewhat remember (because I was on pain medications) the doctor pressing on the inflated area and it sounded like popcorn popping as the air was migrating through the connective tissue. The doctor indicated this was unusual. That was when I was diagnosed with Marfan syndrome. I turned 60 in the hospital. I am now 63 and have had 2 emergency surgeries in the last 3 months for internal hernia, and small bowel obstruction. Luckily there was not a strangulation of the bowels and I didn't need resection. Life is an adventure.

Comment from: MrOK, (Caregiver) Published: March 25

My son recently passed away due to a heart aneurism; he was to soon be 18. The medical examiner stated he died in seconds, there was no chance. He had detached retina, long fingers, caved in chest and other symptoms that relate to Marfan syndrome. I'm not sure if any proactive measures could have been taken, but for families who see these symptoms, please be as proactive as possible and seek medical attention. If an aorta replacement could have been done to save my son’s life, he'd still be with us today. It's a very sad way to lose a young life, one who was extremely smart, bright and truly sincere.

Comment from: Melinda R, 35-44 Female (Patient) Published: August 05

I am a 43 year old female and I'm 181 cm tall. However despite having every symptom of Marfan syndrome, the doctors say I don't have it but they were only doing heart ultrasounds. Wonder if they can diagnose it through genetic genotyping.

Comment from: MrOK, Male (Caregiver) Published: March 24

My son recently passed away due to a heart aneurism; he was to soon be 18. The medical examiner stated he died in seconds, there was no chance. He had detached retina, long fingers, caved in chest and other symptoms that relate to Marfan syndrome. I'm not sure if any proactive measures could have been taken, but for families who see these symptoms, please be as proactive as possible and seek medical attention. If an aorta replacement could have been done to save my son’s life, he'd still be with us today. It's a very sad way to lose a young life, one who was extremely smart, bright and truly sincere.

Comment from: haughtmichele, 3-6 Female (Caregiver) Published: January 16

My grand-daughter has Marfan syndrome and it has affected her heart. She has a good size murmur and we were told it is affecting her aorta. She has already had the lenses taken out of her eyes, and we now have to see a doctor for her spine. I am so scared, I hope they caught this in time and wonder why more people know don’t about this. I hope this will qualify her for SSI (supplemental security income) because we are very poor.

Comment from: FuzzySlippers, 19-24 Female (Patient) Published: March 28

I was diagnosed with Marfan syndrome at a very young age (6). I required one heart surgery in which they had to put an implant because the left side was working harder than the right side of my heart to be able to keep pumping blood through it properly. It neared killed me. I still remember always being tired and getting my teachers frustrated with me in school because it was hard to pay attention being exhausted all the time, due to one side of my heart working harder than the other. By 5th grade I had grown 8 inches in ten months! I was 5"0", then jumped up to 5"8". We could barely afford clothes for me because of my rapid growth. I finally stopped, for the most part, at the age of 20. I"m 21 now and hope I"ve stopped growing! I"m about 6"2" now. But I"m very lanky... and always have been, practically blind. I"ve worn glasses since I was 8. But that"s been my experience. I stay away from drugs and alcohol for concern of my implant. I had one surgery, I definitely don"t want another one.

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Comment from: Katnina, 0-2 Male (Caregiver) Published: March 04

My 2 1/2 year old grandson has Marfan. I am concerned because he is very delayed in talking. I am not able to locate any information that this is a symptom of Marfan. I wonder if we should be looking for another disorder. He has dislocated lens which the doctor wants to remove, wears braces, cyst on brain, on losartan, he is also tall and thin and totally adorable. He has vision, speech, occupational and physical therapy weekly.

Comment from: tallgirl32, 35-44 Female (Patient) Published: January 08

I was diagnosed with Marfan syndrome at the age of 16, but have had various problems since I was 7 years old. I was tested for everything from cerebral palsy to muscular dystrophy. I kept falling over my own feet. I'm near-sighted, and have had my aorta replaced. I've had my right foot reconstructed, and my knees operated on. I did very well in school, and ran track until 5th grade when my heart problems started. The thing is that, because I have jaw problems and can't enunciate my words properly, people think that I'm not smart. I speak 3 languages, and have an IQ of 130.

Comment from: GP, 45-54 Female (Patient) Published: October 24

I am a 54-year-old woman with Marfan syndrome. I am 6'4" tall! I found out I had this when I was in the 1st grade. I have a pectis carinatum, chest which protrudes out. I had very skinny legs and arms. But despite health problems with my heart, lungs and joints, I have managed to live a happy life, marry and have 2 children. One of my children has Marfan syndrome and the other one doesn't. Both my maternal grandmother and mother had Marfan syndrome and they lived to be 78 and 79 years old! I can't do all the things I want to do, and I am tired a lot, but I still live everyday to the fullest.

Comment from: Trinh Nguyen, 45-54 Female (Patient) Published: August 11

Since I was 12 years old, I found that I was always taller than my classmates. I had long legs and arms. I also had nearsightedness, but I studied well in class. After graduating from college, I had an ache in my left eye because of a dislocated lens. It was then that I found out that I had Marfan syndrome. Two years later, I continued to have eye problems with my right eye. Now, in my 40s, I still feel well, but my heart rate has slowed down to about 60 beats per minute.

Comment from: 25-34 Male (Caregiver) Published: April 02

My husband is 31 and was diagnosed with Marfan syndrome at age 5. He had an aortic dissection at age 28 and had surgery to replace the upper part of his aorta and repair his valve. Just three months ago, he had surgery to replace the abdominal section of his aorta. These were huge surgeries with many risks, but they went well, and he is doing great. Last week, we gave birth to our first son. Knowing there's a 50% chance of passing on the disorder, we were anxious to find out if our son had it. So far, he doesn't appear to have any of the characteristics of the disorder, and we are so grateful.

Comment from: Ken Sherman, 55-64 Male (Caregiver) Published: October 15

I am married to a woman who has marfan syndrome. She worried that she would die the same way her father did, on an operating table while the doctors did their best to fix his resected aorta. She was 12. She has taken everything in stride when presented with a new challenge from marfan’s. She has had the heart valve replacement, which saved her life when it could not save her father.

Comment from: Daisy, 7-12 Male (Caregiver) Published: August 25

his spine, plus curvature that was discovered last year. She mentioned he was very tall for his age. He's 5.8' and thin. I explained to her he grew about 4 to 5 in. last year along with developing these weird problems. One leg is longer than the other, the orthopaedic doctor said his ligaments are too loose. He's always been double jointed and I never thought it would ever be a problem. So many doctors/specialists and no one has ever mentioned anything until now. The pulmonary specialist mentioned Marfan syndrome. What a shock! I was okay until I got home and did research I've been crying since then. I don’t know how to feel, but he's going to get an Echocardiogram next month. I pray that his heart comes out okay. I wish this would have been made known to me sooner.

Comment from: Female (Patient) Published: August 25

I am a girl of 17 years. I was diagnosed with Marfan's syndrome at the age of 11. At that very young age I could not take it so easily and I would cry over it everyday. I inherited this from my father, who inherited the same from his father. I am tall with a slim body. My arms, my fingers and my toes are longer than that of any other normal person. And the lenses of both my eyes are dislocated. I have undergone a surgery at the age of 15. Henceforth I am not facing many problems. However I suffer from a severe body ache especially with a severe pain in both my legs which is due to the weakness of the legs and pain in both the eyes very often. I appear normal like any other person but the physical pain that I always suffer from cannot be described, but I am mentally strong and can tolerate that.

Comment from: Chris, 19-24 Male (Patient) Published: August 11

I am a 20-year-old lady who was diagnosed with Marfans syndrome at an early age. It was inherited from my mother who sadly passed away at 38 in 2002. Since then, I have undergone two aortic valve replacements. The first operation didn’t go too well: Six months after the surgery I was rushed into the hospital and told my heart had dilated to 10 cm. But as long as I’m still ticking, I’m still happy.

Comment from: 45-54 Male (Caregiver) Published: May 11

My wonderful husband has Marfan syndrome. He has had several life threatening operations, and still lives his life to the fullest. He is a great hunter, and his father died when he was 6 of a aorta dissection. The doctor’s just didn’t know enough about Marfan’s back in the 60's, and he died in the emergency room. My husband is 45 now, and has lived many years longer than his father, thanks to the great doctors. His last surgery was 10 hours. The heart valve they put in when he was 20 got infected when he was 35, and He had to receive human heart valve and aortic tissue, to save his life. That was many years ago. Since then, his aorta has dissected over a foot, and stopped at the kidney area. He has had many problems over the years with his condition, but he stays positive. His sister, bless her heart, died two years ago from the Marfan’s syndrome. She had a rod put in her back for scoliosis. She lived her life as she wanted, with no doctors, or treatments. She was 45 when she died. Her aorta ruptured. Her two daughters have a form of the syndrome, and one of them, also has a rod in her back. The other has some of the symptoms of the Marfan’s, but has been in good health with no surgery. My husband never had children because he didn’t want to pass on the gene. He has lost most of his family to Marfan’s syndrome, as all but one in his family on his fathers side had the disease. I just want to say that he is a strong man, who knows his limits, and takes care of himself. Except for dragging deer out of the woods that is. His last surgery was years ago, and he was told that the tissue would be good for at least 10 years. He is getting MRI's and check-up's because he says it is "up to me weather I live or die" He may have Marfan’s, but he is getting old and loving it!!

Comment from: mommanette12, 35-44 Female (Patient) Published: April 27

I am a 40 year old mother of 12. Six that I gave birth to and the other six I was blessed to have acquired. I was diagnosed with Marfan's Syndrome 10 years ago. I immediately went into a deep depression. After a few months of feeling sorry for myself, I decided that I was going to live what life I had left. I ignored my doctor and tried to ignore the disease as much as I could. The doctors told me to take it easy and don't over work myself. I not only played basketball, but I coached two youth teams. That was until just two months ago, when I almost died and began to have more problems than ever with my heart. Now I'm scared. I worry about my children. I'm all they have to depend on. What will happen to them when I'm gone? I feel soooo helpless, there's nothing I can do except wait to die and hope that one of my children are not the person to find me. I wish now that I would have listened more and followed my doctor's advice. But I tell you, it is nice to know that I'm not alone with this condition.

Comment from: peggy, 35-44 Female (Patient) Published: April 06

I am a 43 year old woman who has just been told I have Marfan syndrome. I have had a number of medical problems over the last 18 years. Tethered Cord Syndrome, Scoliosis, multiple hernia surgeries, and not least of all, a total lung collapse that required surgery in which the surgeon shaved down my lung, stapled off several blebs, and glued the lung to the chest wall. After that surgery, the surgeon advised that I had had approximately 6 prior collapses that healed on their own. I have long arms and legs and a short torso, along with some of the other characteristics of Marfan’s. I don't know if this is something that I should now look into deeper. The doctor that talked to me about this said he can't be 100% sure that I have it.

Comment from: lgreen710, 19-24 Female (Patient) Published: March 26

I've been in denial about having this disease for almost ten years now. I was 14 when I was diagnosed and never fully embraced the concept of it. I had to have rods fused to my spinal cord from Scoliosis which I developed from Marfan syndrome. From that point on I made it my goal to live my life as normal as I could. I ignored my doctors and played sports. While I had shortness of breath and dizzy spells I pushed on. Now it's starting to come back to haunt me. I was recently given this topic for my thesis paper. Thanks to the research I've been doing it motivated me to go to the cardiologist to get a check up. While my heart isn't in great condition it's not the end of the world. I know now not to push myself physically and how dangerous it is to ignore my doctors. I was depressed for a while, but then I realized that my life could be so much worse. I'm lucky to be alive. I have a great supportive family and I know that there is extensive research in the works. Most all I am thankful that my life is pretty normal.

Comment from: Rwillis99, 25-34 Male (Caregiver) Published: March 17

My Best friend Died from Marfan syndrome Wednesday of last week, he had 2 surgeries within the last year to help him. The second surgery went well and he was recovering but it left his vocal chord paralyzed. He experienced a lot of back pain as the incision from the second surgery was very large. I spoke with him only a few days before his passing and he was in good spirits. He knew he had the condition and was not expected to live to graduate high school but he did, we also graduated college together and he married my cousin and they had a boy only 4 months before his death. I just want to say to everyone out there that has complications with this syndrome to don't give up hope and live everyday with a positive outlook on life as my friend did, he got to experience a lot and had a good life, even though he missed out on a lot he was able to experience a lot more than he ever thought he would. Be strong and maybe with the use of stem cell research and new technology we will one day be able to reverse the genetic effects of the dreadful disease.

Comment from: A friend, 13-18 Female (Patient) Published: March 12

I am a 15-year old girl who has just been diagnosed with Marfan’s syndrome, and the hardest thing I have found is telling people. The complex nature of the disease means it is hard to say right I have this, this, and this and I will get this and this. With Marfan’s, there is no “will” only “might.” I might die of an aneurysm today, or in 10 years, 30 years, or even 50 years. The worst thing after being diagnosed is telling people you don’t know what is going to happen, and often they take it harder than you yourself. Live your life because I am.

Comment from: Cheryl, 55-64 Female Published: March 02

Marfan syndrome information needs to get out into the hands of the public more. My 34-year-old daughter just passed away with an aortic dissection from Marfan syndrome. I am sure I, her mother, have the gene that passed it on and will be tested ASAP along with my grandchildren. I understand now that February is Marfan Syndrome Awareness Month and plan on becoming an active member of the Chicago Chapter of Marfan Sydrome. What a horrible life-taking disease!

Comment from: Mickeyd, 45-54 Female (Patient) Published: March 02

I was diagnosed with Marfan syndrome more than 25 years ago and have been living a great life, even with Marfan syndrome. When Marfan-syndrome-related incidents occur, it has been very difficult, as TIAs and mitral valve issues require my presence in the emergency room, and most doctors are not familiar enough with the disorder to treat me: They look at me and ask what Marfan syndrome is! Not only is this terrifying, but it is also very dangerous: I worry about aortic dilatation while they are reading up on the Internet! I have a great team of specialists, but they are not always available.

Comment from: Euspears, 35-44 Male (Patient) Published: July 19

I am 39 male. I've had Marfan's my entire life. I've had 9 surgeries between stomach, both knees and my feet. Is not an easy syndrome but with proper care living a long happy life is possible. Fr all you that are upset at it, things could be worse.

Comment from: Janice, 45-54 Female (Patient) Published: May 13

I'm 49 now and was diagnosed when I was 12. There was not much information about it then and I really did not understand it. Although advised not to have any, I had three children. I’ve played contact sport most of my life, not realizing that I should not have, knowing in the back of my mind that I have a heart problem. To add to this, I have chronic asthma. Lately, I have been short of breath and we thought it was just my asthma getting worse. Ha – looks like my friend Marfan has resurfaced. The point is, I have had a great life and tried to do everything I could, not thinking too much of the illness. Dealing with my asthma has kept me alert. Now I am starting tests, I’m worried, I’m teary – but I have had a great life. Stay positive and enjoy what you have, and make the most of your life.

Comment from: 0-2 Female (Caregiver) Published: March 25

My 37-year-old son and his two daughters, ages 6 years old and 15 months, have all been diagnosed with Marfan’s syndrome. My 6-year-old granddaughter has a very hard time learning and she rapidly forgets what she did learn. My 15-month-old granddaughter still is not sitting up or making any attempts to pull up or walk. She does like to be held up so she can bounce on her feet.

Comment from: heartbroken, 19-24 Male (Caregiver) Published: March 10

My 22-year-old nephew passed away suddenly from an aortic dissection. The autopsy results discovered Marfan's syndrome. He thought that he had the stomach flu. This was five years ago, and his parents and our family will never be the same!

Comment from: Joanne, 25-34 Male (Caregiver) Published: March 02

My husband was born with Marfan syndrome. The doctors did not realize he had it until he was 4 years old. He had the ascending heart valve replaced in 1999, and in October of 2008, he had the descending heart valve replaced. Recovery is very slow for him, but he is battling through.

Comment from: tlcondon, 25-34 Male (Caregiver) Published: May 27

My husband, who is 34, is currently going through the testing to see if he has Marfan syndrome. His brother, who was 40 when he passed a month ago, died of an aortic aneurism. He had no idea he had Marfan syndrome and neither did we. Since then, my husband's dad has been diagnosed with it also, which we expected, he also had COPD. My husband has a lot of the characteristics of it. He is 6'6" tall. Very long legs, fingers, toes, etc. He is flat footed, slender face, crowded teeth. He went for his first appointment today with the cardiologist and had an abnormal ECG. He goes Thursday for a CT of his chest and abdomen. This has been so stressful for his entire family. One of his other brothers has been having chest pains also. (There were 4 of them). I have been doing a lot of research on Marfan to learn as much as I can on this, just to be there for the family. There just seems to be so much to it.

Comment from: laststand, 13-18 Female (Patient) Published: May 27

I’m a 14 year old girl who got diagnosed with Marfan syndrome when I was 8, I have learned to deal with this, but still sometimes I have trouble, wondering why me? When I was 5 I had an eye operation because I had a problem with it caused by Marfan’s syndrome. I also have a bump in the middle of my chest which every one could notice well until I started growing breasts. Later on this year I am having cardiac surgery at the end of this year. It frightens me a lot. I know no one I am around knows how I am feeling or what I’m going through, but with my friends and family helping me get through it. I’m trying to keep positive.

Comment from: 13-18 Male (Caregiver) Published: May 11

My 13 yr old grandson has dealt with no energy (he was active and on the golf team). He has suffered pain in all joints, back, stomach, head, chest, poor vision, etc. I have seen him slowly withdraw from everyone. His school work has suffered. This has gone on for a year. We finally realized his chest looked different and the testing began. He is being genetically evaluated and is schedule for Pectus Excavatum surgery early June.

Comment from: 45-54 Male (Patient) Published: March 19

I have Marfan syndrome and have been hospitalized on several occasions for related problems, I have CHF, pad, neuropathy, MVP, and several other problems but I am 48 years old and I intend to live until I die. The worst part is the pain from the back and nerve problems and finding a doctor that understands that you need relief from the constant pain. Even just knowing there is a risk of addiction. The answer is not refusing medication, but closer monitoring of the patient and the course of the disease.

Comment from: Lookey, 55-64 Male (Patient) Published: March 19

My baby Sister at age 50 was just diagnosed with this. She is waiting for her Doctors to schedule her for surgery. I am going in to be tested for this as well as other siblings and children. Does anyone one know what the percentage is for siblings/children to have malfan?

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