Discussions By Condition: Medical Stories

epiphyseal dysplasia

Posted In: Medical Stories 3 Replies
  • Posted By: Anonymous
  • February 5, 2009
  • 08:54 PM

This is not about me but about my 15 year old son. He has been diagnosed has having Spondyloepiphyseal dysplasia, however after a lot of researching I am starting to doubt this is actually his problem. He suffers joint problems from the hips down to his feet and has just recently had an operation to correct his right foot, also included stretching the calf muscle and now has 1 leg longer than the other. He has no symptoms such as dwarfism which seems to be a common issue. He is tall, has a waddle which could possibly due to the difference of leg length. has flat feet but nothing like a clubfoot and he seems to be the only person in New Zealand to have this condition. At 15 he should be active and able to keep up with his mates. We are starting to feel quite alone in this and as the statistics say 1 in 10,000 will have this there must be others, right? Can anyone offer any similar story please?:confused:

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3 Replies:

  • I myself have multiple epiphyseal dysplasia. I am a 21 year old female now, but I was diagnosed with MED when I was 12 years old. It was at that time my gait started to change noticeably. With time I was able to build up my muscles to hide a bit of the waddling effect (by about 18 I was walking more normally) but it is still apparent I walk a bit differently. I myself am not a dwarf, but about average height (5'1''). I too have flat feet. I live in america and though some people I know walk a bit pigeon-toed, I too have not specifically come across anyone who has admitted to having MED. You could always look for a second opinion from another doctor but most of your sons case sounds similar to my own (minus the operation). I have trouble with my hips and have lost a lot of cartilage since my first x-rays taken when I was 12. I continued to try and play sports in high school but now I generally stay away from exercise that will strain my legs (unless I am willing to deal with the pain that will come after). I will probably need a hip replacement around my thirties or forties, but I am told I should wait as long as possible before getting one. I hope this helps in some way.
    Anonymous 42,789 Replies
    • November 3, 2009
    • 10:12 PM
    • 0
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  • Hi.Am 28 years old male from INDIA having MED. The above post of a lady is made me to put mine here. Initially my consultant Dr's were saying that am having avascular necrosis. A little later, slowly i started getting pains in my talus bone, wrist, right thumb joint, knees & pelvis. still i don't no how many places left in my body. Am just waiting for the worst to come , so that i can go for a surgery. As of now am walking,jogging and doing all other actions with some restrictions. I will include all of you in my every prayer. Get well soon. God bless you.
    Anonymous 42,789 Replies
    • September 23, 2010
    • 02:28 PM
    • 0
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  • i'm 26, was diagnosed at 2 with MED, walk with a waddle,shortened limbs i'm about 5'1 (although i say 5'2!) i have chronic pain,curvature of the spine,my feet turn in and avoid doing a whole lot as those of you who have the condition will appreciate 1 day busy = 2 days recovery, i'm a rocker covered in tattoo's and have even been a frontman in a rock n roll band and during my teens was quite a tear away..but it's impossible to look cool doing "the MED shuffle" you guys know the one haha doesn't stop you from having a cool life though, been homeless,travelled all around the country,done all kindsa cool stuff, ok i'm a bit burnt out at 26 but ya know i thought it would be kinda cool for people to hear that despite the severity of the condition all can still be cool. take it easy :) J.D
    Anonymous 42,789 Replies
    • January 18, 2011
    • 01:25 AM
    • 0
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