Lance Armstrong, where are you?
I wear the yellow bracelet for cancer, the pink one for breast cancer and a red one for Aids awareness. There is another bracelet hidden in my jewelry box that I should wear but I don’t. It’s made of heavy stainless steal, engraved with a medical cross and it says ‘this girl has ITP’. I’m willing to champion a cause, to proudly fight a disease, as long as it’s not the one that has most affected my life.
I think…maybe someday there will be a Lance Armstrong for people like me. A famous voice, a celebrity and when that person stands up, I’ll stand behind them. I’ll wear the t-shirt and the bracelet. Where is our Lance Armstrong?
I read an article the other day that scared me. It said that autoimmune disease’s are on course to becoming the leading cause of death among young women. The leading cause, deadlier than both heart disease and cancer, we can’t wait for a famous voice. So, here it goes. I’m going to tell you a story, about a girl with an autoimmune disease, a woman like me.
A little over a year ago, Amber friended me on facebook. Amber was a girl I knew in high school. We sat next to each other in band, we played the same instrument and in class we were friendly rivals. We had nothing else in common back then. She came from a wealthy family; my grandparents who raised me were poor. She went to parties and I went to work. She was a champion athlete, graduated with honors and would be attending a prestigious college. Her life was perfect it seemed, mine was hard.
Meeting up again in a virtual world, I was not surprised that Amber's life had gone according to plan. She had graduated from a distinguished law school, was recently engaged and was excited to begin her life. We chatted a bit about our high school days, our home town and her approaching wedding. It seemed we still didn’t have much in common but we became unexpected friends. She was sweet and friendly and her exuberance for life was contagious.
I wasn’t prepared for what happened a few months later. One morning, Amber's family updated her facebook status. They wanted everyone to know that she had passed away. In the middle of the night, a young 31 yr old woman had died. She had gone to the emergency room; the doctors found bleeding on her brain and couldn’t stop it. She and her beautiful perfect dreams were gone. Our high school class was stunned, it wasn’t fair. She had so many plans and so much life to live.
Over the next few days we found out why Amber had died. For the past ten years she had been battling a rare autoimmune disease. She had ITP, idiopathic thrombocytopenia purpura. Her own body treated her blood platelets as if they were a foreign enemy. Without enough platelets, she suffered from spontaneous bleeding episodes and the last one took her life. Amber and I had something in common, we both had ITP. We never talked about it but we fought the same fight, a rare one. Maybe we kept it secret for the same reason; we didn’t want to be defined by our illness. I took my bracelet off and put it away. I was heartbroken for her and scared, it could have been me. Amber was brave, she fought her disease. She lived her life and dreamed her dreams. If she were here now, she would be our Lance Armstrong.
September is ITP awareness’ month; only last year this day made it to an official calendar. As the month approaches Amber is on my mind. I’m not famous and I don’t feel brave. But it’s time for me to put my bracelet back on. It’s time for me to become a voice for women like me. It’s time for me to tell anyone who will listen about ITP and autoimmune diseases. It’s time for awareness. Amber, you’ve got me.
In the coming days as I try to find the words, I’ll be sharing my research with you. I also want to encourage you to do your own. To get you started I will attach some links, one from Livestrong.com. Yes, thank you Lance.
Simply stated an autoimmune disease is any disease where the body’s immune system attacks itself, affecting both men and women. Unlike an acquired immune deficiency, it is not contagious and cannot be passed from person to person. In some cases the diseases may have a hereditary link. Only recently scientists have become aware of a common link, environmental triggers. There is overwhelming evidence that pollutants in our environment may trigger these illnesses. With this new perspective, what were once thought to be unique diseases now fall under one gigantic umbrella. That’s scary.
It makes sense, as the world becomes more polluted and more chemicals are used in well, everything. Autoimmune diseases are on the rise. We are polluting our planet, we are polluting ourselves and we are dying from it. One more reason we should fight for a brighter, cleaner tomorrow, our lives depend on it.
Reference and awareness links: