Taking my Voice to Congress in 200 Words or Less
I just posted my story to the Lymphatic Education & Research Network as they will be putting together a web page that will be Voices to Congress and tell the stories of the thousands that suffer from lymphatic disease.
Here is what I wrote:
I am a 16-year-old sophomore in Texas. The impact lymphatic malformation has had on my life is dramatic, because it not only has impacted me, but my family as well. I was born with macro-cystic and micro-cystic cysts in my neck, jaw and tongue. I have had 8 surgeries including a tongue reduction surgery where they cut 7 millimeters out of the middle of my tongue and sewed the two sides back together. I also had some of the tip of my tongue removed. I continue to experience tongue swellings randomly. In fact, as I write this, I am swollen and in pain. There is no cure and it is hard not be very mad and frustrated that there is currently NO MONEY being put toward research for a cure for lymphatic malformation. Lymphatic Malformation also effects my education, my social life and my emotional state.
A cure would mean the world to me and to the thousands that suffer from lymphatic malformation and lymphatic disease. We are a large community with nowhere to turn and I would literally do just about anything to help find a cure. I am trying desperately to raise awareness and research money.
If you suffer from lymphatic malformation or any lymphatic disease and want to share your story and reach Congress, here the form: