You can imagine the loneliness of having a disease that most people have never heard of, that has no treatment, and that is not even being studied by any medical researchers. Many rare diseases are serious. Many are life threatening.
Rare diseases are also referred to as orphan diseases. Most are genetic and thus are present throughout the person's entire life, even if symptoms do not immediately appear. Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthday.
Since I have had the honor of being involved in this project, I have grown to believe more strongly that this collaboration is a very meaningful and important process. I am writing to alert and encourage people to raise awareness of rare disease among the community and create an environment with better care and knowledge that can lead a healthy life.
I hope that this project will engage individuals with diverse abilities in order to promote full participation in community life and helping others along the way.
The most heart touching story I have heard is from a girl who suffers from a rare disease. She is a typical teenager, full of life, but battling a devastating genetic condition. She suffers from an unknown seizure disorder as well as chronic fatigue and pain. After Chris Gibson and I (Team OrhaCure) posted an inspiration board on Instagram, she immediately became one of our followers and shared her story, writing:
“Do not judge a girl on what you can see. She may be fighting cancer, or an incurable disease; she could be a girl in chronic pain. She comes in many forms. She is breathing, but she is hurting. She may look young, but she feels decades older. She smiles, but her heart sobs. She walks, she talks, she cooks, she cleans, she works, when she can, and sometimes when she can’t. She is, but she is not, all at once. She is here, but part of her is missing. She fights a battle you will never see. But if you can take a moment to look beyond the smile, you might see that the girl is me.” -@living_warrior
Together we will fulfill our duty of cherishing every human life that suffers from this condition.