Letters of My Life: D goes for Dysmelia

Just a random dysmelia hand.

I was going to have my D for Dreams, but as I have completely own blog for my dreams, I decided to have the D for Dysmelia.

Dysmelia is a rare congenital disorder referring to the limbs. I have it, and it often gains attention by new people I meet. The thing that people notice first is the fact I don't have left arm at all. About 20-30% people pay also attention to the fact that I don't have an elbow. Making it impossible for me to bend my arm from the parts that require the elbow moving. But extremely rare people notice that I have malformations also in my fingers. My thumb has one muscle less than typical people. Obviously it doesn't show outside unless you're a professional of the subject. Also the bones of my little finger and ring finger are connected much earlier than normally they would, making it impossible for me to move my ring finger without my little finger moving too, and vice versa.

There are many forms of dysmelia. It can be missing a limb, like in my case. It could be any other limb too, or parts of limbs. Another form is malformation of limbs, which can show in even more variety. Like I described my elbow and fingers. The third form is polymelia, "too many limbs". Which I don't have. Could be useful, though.

The person with dysmelia has these things since (s)he's born. Every year 60-80 children in Finland are born with dysmelia. It's caused by something going wrong during the pregnancy. Therefore somebody losing a limb because of an accident doesn't have dysmelia. That's completely another thing though it'd look outside the same.

So, what can cause a woman to have a child with dysmelia? One thing is that it can be caused by inheritance of abnormal genes. Dysmelia can also be caused by use of teratogenic drugs like alcohol or many medicines during pregnancy. Environmental chemicals and ionizing radiation are known to cause dysmelia as well as infections and metabolic imbalance during pregnancy. In my case the doctors have told that the most probable reason I got dysmelia is that my mom had an overdosis of the vitamin A. She used to eat lots of liver, because back then doctors didn't know the risks and therefore didn't warn about it. Nowadays pregnant women are told to avoid eating liver during pregnancy.

Dysmelia has many different levels of severity. Those effect to the fact how much special needs the child (and adult) has. It could be anything from only one malfunction of a toe to missing all the legs and hands. However, dysmelia itself effects only to the physical body and doesn't effect to any mental attributes like intelligence. Of course, if the mother has for example been influenced by radiation, it's possible for the child to have dysmelia and some other syndrome that effects the mental attributes. But it's not a rule.

When I was born in 1986, the old fashioned doctors told my mother that I would never even learn to walk. Though I had perfectly normal legs. Back those times people with dysmelia alike to mine would have been just institutionalized. My mother as a nurse of course didn't see any logic in the doctor's claim, and raised me as I was a normal child who just had to learn new ways of making certain things. And I'm extremely happy, because I grew up to be just as independent as those who didn't have dysmelia. Nowadays I don't even remember it unless somebody makes a comment of it.

And in the end I want to tell something to the parents of a dysmelia child: never underestimate the physical capability of your child. Instead courage him to learn to do things by himself. There are always ways, they just needs to be found. For example, I shave my armpit with my toes. Yes, exactly. Pretty cool, and I bet almost nobody with two arms could do that. ;)  Worst thing you can do to your child is to make him identify himself as a handicap. Always search for the positive sides and your child will grow up as an independent self-confident person.