Question about Marfan syndrome

  1. I am a second year nursing student and currently in my Ped. rotation. I recently watched an educational video on Marfan syndrome. I learned that this disease is a genetic disorder, and if a patient is suspected of having the syndrome and there is a positive family history of it, the patient's risk of getting the disease is increased. I also learned about management of this syndrome. However, the video did not really specify exactly waht Marfan syndrome is. It was also difficult to understand. Has anybody had experience with caring for patients with Marfan syndrome? Can anybody explain what it is and certain compications associated with it? I would appeciate any inforamtion. Thank You
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    About APinkston

    Joined: Sep '01; Posts: 17; Likes: 1


  3. by   Danielle4
    First, I do not have any experience of this so I am hoping others will respond to you as well.

    I am a Biology Major, but I am contemplating changing to the nursing program. Do you like nursing school? I am afraid I won't make a good nurse so I am undecided about attending nursing school. I cannot think of anything to do with a biology degree and I love clinical care so there is my debate.

    I do not know much about nursing, but I however have taken anatomy and physiology as I know a little bit about it.

    Marfan's syndrome is a connective tissue disorder that has to do with bones. If you see people with long slender limbs this is one of the ways to identify marfan's syndrome.

    It results from excessive cartilage at the epiphyseal plate (growth plate). As you know our bones grow by ossifying cartilage into bone at the epiphyseal plate which lengthens our bones. (This is how doctor's can tell us if we are going to grow anymore by our X-rays you can see the spaces on the x-ray -evidently they have more cartilage and space at these growth plates which results in marfan's.)

    There are other diseases that are affected by this like the opposite of this would be achonddroplasia whith also results in the growth only in this case it grows slower and adults appear to have short stocky limbs.

    I wish I could give you more information, but I am still learning as you are. If you would like to look it up though check out an anatomy book under skeletal or connective tissue disorders. Find out how the bones grow and are formed and you will understand these disorders better.

    I hope that might help a little bit.
    Good luck with your studies!
  4. by   kids
  5. by   Nacoya
    Just a short note to add:
    Individuals with Marfan syndrom often need cardiac surgery due to the risk of aortic aneurym
  6. by   kabarnes
    There is a website It contains lay person information for parents about congenital heart defects. It has simplistic explanations, but I think it does a great job of explaining everything. There is a specific section on Marfan's. Check it out, as a nursing student I think it would be very helpful to review the sections on ASD, VSD, Tetrology of Fallot. I remember in nursing school I had sucha a hard time remember all of those. Good luck to you.
  7. by   manaAJ2
    I'm going to be a junior in a BSN program, but I do know a friend with Marfan syndrome. It is a syndrome of the connective tissue if i can remember right. Its categorized by very long limbs, and people with the disease are at a great risk of cardiac problems because the major vessels can become very thin. The person I know with it had major cardiac surgery when he was only 5 years old. I also know that the disorder can affect your eyesight too. Hope this helps
  8. by   Rhon1991
    I cared for a 20 some yo that died from his aortic aneurysm that had Marfans. He was not a surgical candidate.
  9. by   CMERN
    My youngest sister has marfans syndrome. During her childhood she would become fatigued during exercise, my mother labeled it as "laziness" signed my sister up for Basketball , swimming, bike riding, sister was extremely thin, long boned, and odd looking child with big blue eyes.... My sister was seemed sickly alot. A chiropractor female friend of my dads was so worried about her that the friend insisted my dad take her to a pediatrician . By this time my sister was 13, my parents were divorced (hence a retarded, continuing argument between mom and dad over insurance an dhealthcare cost) Any ways she was diagnosed... It is a cartiligenous defect,and more so a collegen defect, in that the parts of our joints, eyes,skin, heart valves etc... that can expand with exertion and return to normal size..(the aorta) do NOT for these people.. strenuos exercise is DANGEROUS for them... as they age because of the aorta they become short of breath,tired alot, and are always at risk for aortic anneurysm. My sister when diagnosed went under the care of an excellent Pediatric Cardiologist who followed her health into adulthood,and referred her to an excellent adult cardiologist.. Sis married, GOT PREGNANT to all our horror.( on purpose)at age 25. WEnt into V-tach at eight months..had a c-section... a healthy child. At age 30 she became so fatigued just with walking to the car... her cardiologist had followed her aorta size every 6 months.. (the aorta had enlarged) at age 30 she had aortic valve replacement..... She now has a 7 year old child, a wonderful husband teaches school, is envolved in her families life...and has more energy than ever before and very few boughts of colds and sickness..Clinically she was and is a prime example of MARFANS.....Mom thought she was lazy.... MOM is blessed now with a more healthy daughter and wonderful grandson. I have 4 children and am researching the genetics of Marfans....
    Last edit by CMERN on Nov 4, '02
  10. by   karenG
    people with marfan are usually very tall with long thin limbs and fingers. they often have ophthalmic problems- due to the shape of the eyeball

  11. by   BadBird
    Abraham Lincoln had this disease.
  12. by   memphispanda
    Discovery Health channel has a show on RIGHT NOW about Marfan syndrome. It's the medical mysteries show. Tons of information.
  13. by   jackie38
    I cared for a girl that was in elementary school that had Marfan's. She had to be extremely careful at recess and phy ed not to over exert herself for cardiac reasons but also not to receive any hit to the head. Retina detachment is also a complication of this disease.
  14. by   blondiii
    While sitting with the ladies in my ex-husband's family in Saudi a couple of weeks ago, my ex-sister-in-law (sorry for all the ex's, what do you say...)who is a highly aclaimed internist there, called my oldest son, who's just chosen orthopedic surgery as his speciality, to confer with her. The topic was my youngest son who is 14. She examined him, in one of the bedrooms, and suggested that he has Marfan Syndrome. I just thought he was tall and lanky. Thank God she noticed. I guess it slipped past all the docs in the US here, or just came out recently, during his growth spurt. He will have three exams, eye, heart and bone. It was a very rough time for me, learning that this is probably true. There are some great sites and sources for information. The hardest thing is that my baby just lives for soccer and wanted to "go out" for high school basketball this coming season.(The competitive sports and hard training will be out of the question.) I hope he doesn't have the disorder. He doesn't know anything yet, until he sees the doctors there in Riyadh, to make sure. I didn't stay there long, just a week, cause it's his time with his dad during the summer, plus the atmosphere about US citizens is currently scary. Anyway when he comes back, I'll be taking him also to one of the diagnostic and treatment centers over in St. Louis. From what I've read on the main site, he does appear to have the disorder. But it is encouraging to read the positive stories. Sometimes it is caused by a mutation in a specific gene. He has always been able to bend some of his fingers way back, and I have always sensed a fragility about him, but nothing specific. I'm sure this wasn't apparent until just recently, the past few weeks. praying he doesn't need heart surgery. I've also read that sometimes they are prescribed beta blockers. This is a blow, but it looks like it is something that can be lived with. I'm so glad I found this thread when I just did a search.
    Last edit by blondiii on Jun 20, '04