Multiple Hereditary Exostoses is a bone disorder of growth; generally hereditary, although not in my case. I have the rare genetic mutation that causes MHE, but, as my doctor said…it has to start somewhere, and it’s started with me.
Having MHE means that I have bone growths that grow on my long bones (legs, arms, etc) and form around joints (shoulders, hips, knees, ankles, wrists, fingers etc). I’ve had eleven (or twelve, it’s hard to remember) surgeries to remove the bone growths that cause issues. Bone growths need to be removed when they start stretching and damaging nerves and tendons, or when they start fusing the joint. They also get removed when they are too pointy and sharp (since they’re just darn uncomfortable).
When I was pregnant, I underwent genetic testing to see what genes my MHE was located on (since I have an odd case). My parents and sisters were also tested, and it was determined that I am the only one in my family with MHE. The point of these tests was so that we would know what genes on Nolan to test to see if he has the MHE gene.
In October of 2009, Nolan’s genetic result tests game back…and it was determined that he does indeed have the MHE gene. He won’t display any symptoms of MHE until about 18 months, and we can still hope that he doesn’t display any at all! Perhaps he’ll just carry the gene, or only get a few bone growths. It depends on the person, really, and the severity of the case. My case is considered a more severe case, as I constantly have issues with my bones and joints and nerves. BUT, this mama is holding fast to the hope that Nolan won’t display any symptoms and that he won’t need surgeries as a kid. Nothing cramps a childhood like surgeries, unfortunately!
If you have MHE or know somebody who does and would like to join a support group, check out MHE and Me – I’ve been a member since I was a kid. You can also feel free to email me if you have any questions…I’ll do my best to answer.