Dwarfism Awareness Month 2018 - "A cure?"

Hey guys! Sophia here with another Dwarfism Awareness video for 2018. I wanted to talk about this idea of an awareness campaign. We have Dwarfism Awareness Month, which is awesome because it's an opportunity for our community to really talk about the details about our unique experiences. But you know, you hear a lot of this awareness of all sorts of different things, cystic fibrosis, breast cancer, all the kinds of different disabilities or unique genetics. Sometimes it feels like these awareness campaigns are about curing something. And I want to say that for me, Dwarfism Awareness isn't about talking about how we're going to cure anything. It's about expressing our unique experiences and hopefully shedding light on how we can change our behavior in the biopharmaceutical world. There is a drug being tested, clinically tested, called Biomarin. Biomarin is currently a very complex and complicated thing that our community is grappling with. A certain amount of professional individuals have come together and tried to create a drug that essentially helps with irregular bone growth and different complications that people with achondroplasia have. Achondroplasia is the most common type of dwarfism, in case you didn't know. It has been a real hard thing to swallow because it feels like big drug companies are making drugs to fix dwarfism or cure dwarfism or make little people extinct. I also have a problem with it because at the moment, all they're focusing on is achondroplasia. I don't have achondroplasia. I have spondyloepiphyseal dysplasia congenita. It is one of many types of dwarfisms. There is a multitude of skeletal dysplasias that all have unique genetics. If we're going to have a conversation about how we want to help or fix or change these unique genetics, I think that we really need to consider the whole scheme of things that we're talking about. What are the details of being a little person that need to change? I honestly think that we are up against a lot of physical barriers and limitations, but I think that our biggest barrier, our biggest hurdle that we have is a social one. The world that we have been raised in doesn't see us as equal. I think that there are two different avenues that a lot of talk when it comes to disability gets put under. We have the medical side of things and we have the social side of things. When it comes to little people, actually, there is a huge, huge gap of knowledge when it comes to the medical professionals. I am lucky because I'm part of Little People of America, which is an organization that has resources, that has doctors, that has a medical board that I can make an appointment with and ask questions. But the little person that's out there that's not a part of LPA and doesn't know where to go just goes to their regular practitioner or their regular orthopedic doctor and hopes that they have an answer for them. For me, it's before we even try to start making drugs and manipulate our genetics, how can we help ourselves by helping the grander medical professional field in advocating for people with unique genetics, for people with skeletal dysplasias, to say, hey, this is something that doctors need to specialize in. I can't tell you how many times, I can't tell you how many times I have conversations with my girlfriends, with my all different friends that are part of this community that have war stories from doctors. My whole mission here is to say, I think that all of this is important, I think that being aware on a medical level is so important, being aware on a social level is so important, but let's be really, really careful about what we're trying to do and let's be really careful about what we're trying to say with our intention when it comes to this medical field and unique genetics. That's my PSA for today about dwarfism awareness. There are currently clinical trials going on for a drug called Biomarin that is supposed to help certain things for people with achondroplasia. I personally find it very controversial, very complex, and an extreme red flag when it comes to our community because I think we need to discuss and know what the importance is about what we want to say, about who we are, and how we contribute to the world.