Hereditary Mulitple Osteochondromas

Hereditary Mulitple Osteochondromas (formally Multiple Hereditary Exostoses, or MHE) is a bone disorder of growth; generally hereditary, although not in my case. I have the rare genetic mutation that causes HMO, but, as my doctor said…it has to start somewhere, and it’s started with me.

Having HMO 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) fourteen 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).

My case is considered a more severe case, as I constantly have issues with my bones and joints and nerves. According to one Genetics Counselor I met with, I “don’t have the same characteristics of HMO as the other people with HMO do”.

When I was pregnant, I underwent genetic testing to see what genes my HMO 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 HMO. The point of these tests was so that we would know what genes on any children we had to test to see if they would have the HMO gene.

In October of 2009, N’s genetic result tests game back…and it was determined that he does indeed have the HMO gene. He unfortunately displays a lot of symptoms of HMO. Our second born son, Aj, also inherited my HMO.

N suffers from pain frequently (whenever it’s damp, raining, or too cold, and whenever he over does it). He’s bothered most by the painful bone growths on his right shoulder and both knees, although his wrists will bother him often as well.

Aj doesn’t really seem affected by his HMO just yet. He has a few bone growths on his legs and wrists, but nothing seems to deter him from playing hard and running around nonstop.

Both N and Aj are delayed in their fine and gross motor skills and both of them regularly go to Occupational and Physio Therapy.

Right now, our treatment plan is to keep the boys as active as possible, attend the OT/PT appointments, and take it easy when needed. Surgeries may be in their future, but for now…they aren’t a necessary treatment option.

I’ve blogged before about what it’s like to be a mother with chronic pain; it’s no easy task. I love every minute with my boys, but my body definitely feels it. I gotta say though, if I could…I would take all the bad pain days on behalf of them so that they wouldn’t have to suffer ever.

If you have HMO 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.