Tuesday, October 5, 2010

Dwarfism Awareness Month

Last year, the Little People of America (LPA) declared October as "Dwarfism Awareness Month". There are a lot of these kinds of "awareness months" around (I believe that October is also "Breast Cancer Awareness Month" as well). 

Before February, I had NO awareness of dwarfism at all. I had seen people with dwarfism every now and then, but never interacted with them at all. (I have met some lovely people online over the past eight months - some who have some form of dwarfism, others who have children with dwarfism, but I still haven't interacted with any of them "in real life" - although I hope to!!)

It is funny how quickly things change though - and the crazy thing is, this could happen to anyone. The form of dwarfism that Maddy has (Diastrophic Dysplasia) is a genetic condition that is inherited from the parents. However the most common form of dwarfism (Achondroplasia - responsible for 70% of dwarfism cases) is usually a random mutation which could happen in any family.

Here are some dwarfism facts:
  • There are over 200 distinct forms of dwarfism and skeletal dysplasias.
  • Many forms of skeletal dysplasia are not compatible with life - 55% of babies diagnosed with any form of skeletal dysplasia do not make it to six weeks old. (thankfully Diastrophic Dysplasia is compatible with life - Maddy is expected to live a long, full life :) )
  • People with dwarfism are generally not taller than 4' 10" at adult height. The typical height range is 2'8" to 4'5". (average height for DD is a bit under 4' tall)
  • Eighty percent of people with dwarfism have average-height parents and siblings.
  • Skeletal Dysplasias affect bone growth, but generally do not affect cognitive abilities.
  • There are an estimated 30,000 people in the United States and 651,000 internationally with a type of dwarfism. 
  • There are two types of dwarfism: proportional (where the whole body is small, but in the same proportion to an average height person), or disproportional (where the head and trunk are average sized but the limbs are much shorter). Maddy has a disproportional form of dwarfism. 
  • In July 2009 the word "midget" was declared inappropriate and offensive. Preferable terms are: having dwarfism, short stature, little person, lp, and the medical terminology use of dwarf.
 Hong Kong has no organisation for short statured people. Australia's is the Short Statured People of Australia (that website really needs a good overhaul!!), and New Zealand's is the Little People of New Zealand. I plan to get involved a little with SSPA when we move back to Australia - I think it is good to have some contact with people with similar issues to Maddy, that way we won't need to "reinvent the wheel" when it comes to helping her through the issues she will face growing up.

For an list of people with dwarfism, you can check out this list on Wiki. It's really interesting looking at all the people and what they accomplished.

1 comment:

  1. Wow - October represents a lot of things! It's also Pregnancy and Infant Loss Awareness Month. It's amazing how one's "awareness" changes when placed in a situation.