So as I mentioned in a previous post, I was going to start sharing more of both my personal and professional development (to a degree).

One of the topics that I’ve touched on here and there on the blog is fitness. I’ve reviewed a program from Beachbody (Shift Shop), have shared one or two shakeology recipes, and mentioned how much I enjoy the programs.

Getting into the “best shape of my life” is both on my 101+ goal list, and just a basic goal in general. I’m not aiming at getting down to a size 2 or 0 (that isn’t in my bone structure), but just getting to a point where I’m happy with what I see in the mirror (so a size 8 or 10 [maybe a size 6] is what I’m aiming at).

So, where is this going you may ask? If we crossed paths on the streets, or if we’d gone to school together, you wouldn’t know just by looking that I’m dealing with a silent and rare disorder that affects 1 out about 75,000 people in the Western world. This disorder is one of the many reasons for my frustrations during public school years, and one reason why I never tried to participate in any type of team sports. It is also why I prefer doing workouts in the privacy of my own home.

The silent and rare disorder that I have (and actually so does my younger brother [to a much large degree; my older brother barely has to deal with it; and my mother has it as well)—so you can say that in my case—it is a silent, rare hereditary disease called hereditary multiple exostoses (HME) or it also known as multiple hereditary osteochondroma.

HME is a disease that results in the formation of tumors at the end of the long bones in the body (so they are predominantly found on the arms and legs [sometimes can also be found on the rib cage]), resulting in potential deformities of both the arms and the legs. While this isn’t a “new” disease (it has been known to doctors for basically 200 years), its only been during the past two decades that the underlining biochemistry and molecular biology of the disease as been discovered (more on that in another post).

As I stated previously—I have a somewhat mild case of HME, compared to others (especially my younger brother). I do have some of the more noticeable deformities—I have knock-knees (where the knees angle inwards), so probably could also be considered bow-legged. I also have patellar dislocation—which basically means my knee caps can slide in and out of place whenever they want (though luckily its been a long time since they’ve done that).

In addition, I have issues with my wrists, ankles, and toes (due to not all the bones either forming all the way or connecting to other bones). I remember being in college and going to an foot doctor about the pain in my feet and being told that I’d have to have surgery, and it may not solve the problems. Needless to say—I haven’t had the surgery, and I just try to find good shoes with arch supports.

Though that doesn’t help the problems of my toes. My toes look like I’ve worn high heels most of my life (the big toes are pointed inwards and over lap the second toe), and I have what could be considered a bunion or a bursa on the side of each large toe as well. The toe issue makes doing lunges problematic due to the fact that those two toes are getting pressure put on them from a non-normal angle and increases the pain by about ten to twenty fold.

So how has this silent disorder caused grief and frustration throughout the years? Due to the very slight length discrepancy of my legs (and being knock-kneed) I run with a slight limp. Nothing major, but as a child—it was something the other kids made fun of me for (which is why I hated PE classes in elementary school and the forced outdoor activities and competitions); in high school it made it difficult being in marching band (having to walk/march with legs straight and stiff [I was always afraid that my knees would lock on me and I’d be stuck for hours in pain waiting for them to loosen up so I could bend them], plus at times it was difficult to hold the flute up that long without my wrists starting to hurt majorly).

So I’ve come to the realization that being silent about the disorder hasn’t really helped me through the years (I’ve only been silent, because my parents didn’t want me using it as an excuse to get out of things; no matter how legitimate the excuses could have been).

As I continue on my journey to get into “the best shape of my life”, I’m going to be figuring out how to modify moves to fit my movement restrictions. I know that doing lunges are difficult (mainly in regards to the left leg), so I need to work on strengthening the ankle and knee so that it becomes a little easier.

I know that when I do yoga and pilates I won’t be in perfect alignment, and my legs won’t be perfectly straight (mainly because they aren’t). I need to work on strength training as well as cardio, and to do that there will have to be muscle specific workouts to build up strength in certain areas of the body.

I also know that I should be making an appointment with a doctor for a general check-up, and to get the varicose veins on the left calf taken care of. Also should have the check ups since there is a slightly elevated risk of tumors going malignant and causing cancer. Though how soon I’ll be making that doctor’s appointment, I’m not sure. It isn’t that I have a total dislike for doctors (or white coat syndrome), it’s just that I don’t like being talked down to and having everything blamed on being overweight (which for the most part doctors have my entire life—problems have been blamed on the weight issue).

The main reason why I posted this, is not to use it as an excuse for why at times I fall of the exercise train or why I don’t do certain exercises. I’m sharing it to show that I’m human, and that even though I could just state that due to having this disease I can never get into shape–I’m stating that despite this disease–I’m trying to get into the best shape of my life.

So, in conclusion—be nice and considerate to those who are trying to get into shape and who may have movement restrictions that may have them moving slower, or with a slight limp. Living with HME isn’t fun, and if you haven’t had the numerous surgeries to remove the various tumors—it is also a painful life as well.

Reference: Duncan, et al. 2001. “The link between heparin sulfate and hereditary bone disease: finding a function for the EXT family of putative tumor suppressor proteins”. The Journal of Clinical Investigation 108(4):511-516