Ramblings of a bisexual Christian little person

Rare Dwarfism Conditions Post #7 - Spondyloepiphyseal Dysplasia Congenita (SEDc) -(aka my condition!! 😊) Spondyloepiphyseal dysplasia congenita (SEDc) is a genetic disability and a form of skeletal dysplasia.  “Spondylo” means spine, “epiphyseal” means the ends of the long bones, and “dysplasia” means a difference in growth/development, so spondyloepiphyseal dysplasia (SED) is a condition that affects the growth and development of the spine and long bones.  “Congenita” means present at birth.  SEDc is the most common form of SED, but there are other forms.  The other forms of SED are caused by changes in different genes, so are different than SEDc.  Genetic Changes SEDc is caused by changes in a gene COL2A1 , which is located on the long arm of chromosome 12.  COL2A1 gives the body instructions for making a protein called type 2 collagen.  Type 2 collagen is one of the major building blocks of cartilage and the spinal “discs” between vertebrae, and is also import

6 years. May 19th. Wednesday night.  My body remembers. It knows it was tonight. Fear Nausea Eyes Fear Heart pounding Agonizing pain Yelling Blood Not sleeping, just wanting the night to be over Desperate to appease  Fear 6 years. Of checking out. Of numbing the pain. Of trying to escape. Of flashbacks. Of triggers. Of trying to protect myself.  Of trying to forget. 6 years of surviving. Of accepting. Of learning how to live with this, how to trust my brain again.  How to trust myself again. Of love. Of heartbreak. Of new beginnings. 6 years of badassery. Of friends and family. Of love. Of brave sisterhood. Of strength. Of justice. Of healing. Of hope. Of light. Of darkness. Of faith. But tonight my body remembers. 6 years

I am a little person. I have been a little person since birth, and will be a little person for the remainder of my life.   Over the past couple of years, it's become increasingly more common for people (mostly outside of the dwarfism community but also sometimes within it) to say things to me like "but you're not that little" or "I don't see you as a little person." After increasing frustration with these comments, it's time for me to unpack them and spread a little dwarfism awareness. You see, I DON'T have achondroplasia, the most common form of dwarfism.  I therefore don't LOOK like I have achondroplasia, since I don't (surprise surprise!).  There are now over 400 recognized forms of skeletal dysplasias, each with unique features and differing body proportions.  Really the only feature that is shared among all of these conditions is short stature. The Little People of America defines dwarfism as a medical condition causing short s

Two and a half months ago, I had my hips replaced, and for the first time in two years, I am comfortably walking without pain. Before my surgery, I used my scooter or wheelchair most of the time to get around. Now that I'm traveling on legs rather than wheels, people make a lot of assumptions about my attitude towards my wheelchair. Don't get me wrong, I love my new hips. Simple tasks like cooking, doing dishes, laundry, and driving are so much easier without chronic pain. I have more energy and don't have to worry as much about if I'm going to run out of spoons (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/). I no longer have to deal with obnoxious side effects of pain medication. And it feels good to walk, to push my body and discover its new limits; after all, I'm an athlete. But I still don't want you dissing my wheelchair. When people make comments like "wow, you're not in a wheelchair anymore!", it assume

With the Religious Freedom bill passing in Indiana, there's been a lot of discussion surrounding who is welcome in businesses and who can be turned away.  Without entering into this debate, I'd like to take this opportunity to point out something that most people just don't think about. When a store or business isn't accessible to people with disabilities (and the ADA is poorly enforced and doesn't apply to old buildings), business-owners are refusing to serve customers with disabilities.  Is this intentional? Most likely not.  However, the effect is the same.  By requiring customers to manage stairs to enter a building or room, they might as well have a big "NO WHEELCHAIRS ALLOWED" sign on the door.   Most businesses want to be accessible to people with disabilities.  Many employees will often offer help to a potential disabled customer to get them into the building; but offering to carry someone's wheelchair into a building does NOT make that bui

Earlier this evening, I was driving into town listening to a country music station, when an advertisement caught my ear. Apparently the motorcycle rally "Thunder in the Rockies" hosts an event "Extreme Midget Wrestling."  Here is the letter I sent to the radio station: As an individual with dwarfism, I was shocked and disappointed to hear an advertisement for "Extreme Midget Wrestling"on your station. The term “midget” is outdated and highly offensive to most of us with short  stature, because it originated with the “freakshow” era when little people did not  have rights as equal members of society. Quoting from the website “Understanding  Dwarfism” (http://www.udprogram.com/basic-facts-3-2), “ in recent decades,  midget has become recognized as a derogatory, hurtful term, a term of derision  used to ridicule short-statured individuals...it is a word that identifies a person of s hort stature as a “lowbar” spectacle, cheap gag, and sideshow act.” Th