Last week I had the pleasure to attend the Oklahoma Lupus State Advocacy Day. It was held at the State Capitol and I must say I had an absolute blast!!
I met some wonderful people and was even given the priveledge to speak among a panel of speakers which included congressmen, doctors and researchers, representatives of the Oklahoma Lupus Chapter and others like me, who gave testimony about their experiences of living with Lupus. It was truly a day to remember. Here's what I had to share:
"My name is Chandra Hightower and I’ve been living with Systemic Lupus since 2003.
The first four years were very challenging and painful for me, because no one understood what was wrong …and I didn’t exactly know how to describe it. It was even more difficult to explain, because I just didn’t look sick! I have experienced discrimination, and taken the brunt of verbal attacks because of my condition, even by physicians! The negativity and indifference I encountered made me reluctant to tell people about my Lupus, because I didn’t want to endure further rejection. It wasn’t until about five years ago that I realized I had to put my fear behind me. I’d reached the point where I just couldn’t hide it anymore and I had to speak out.
I became increasingly frustrated and angry. These emotions reinforced the questions in my mind as to why so little was known about Lupus, as compared to other auto- immune diseases like Rheumatoid Arthritis, Multiple Sclerosis or Cancer. Why didn’t people know about it? Why did people react the way they did when they learned I had Lupus? Why did I feel so alone in my struggle? Seeking answers to these questions and recognizing the need to fill the gap between Lupus and other related illnesses, I began to do my own research and gathered as much information as I could.
When I was diagnosed, there was not much going on in terms of awareness and education. Many people I encountered didn’t know what it was. I myself only vaguely heard of it and knew of only one other person who had it. I was unaware of organizations like the Lupus Foundation of America and found that the information and resources available at the time were very limited. Fueled by my dissatisfaction and refusal to give up, I initiated my own campaign called LEEP for Lupus Awareness™, and created TheLEEPChatChannel™, a YouTube broadcast. I even have my own color and Mascot (the frog)!
In the past two years since launching my campaign, I have had the privilege of collaborating with various organizations and have achieved moderate success and recognition. The greatest reward however, is knowing that I am helping others. I am deeply moved by the emails and letters I get from people, who want me to play a part in sharing their stories as well. I am humbled by the fact that they trust me to answer their questions and deliver information they can rely on. The response to my efforts has been truly overwhelming.
Living with Lupus from day to day is challenging for me and there is no aspect of my life that it has not impacted in a major way. I wake up every day not knowing whether I will be able to get out of bed and even after all these years, I still can’t seem to get used to the pain and fatigue, the medications and the doctor’s visits.
The physical and emotional turmoil I’ve suffered is nearly indescribable, but in the midst of it all, I do manage to have some very good moments. I often compare my situation to being on a rollercoaster: reaching exhilarating heights then dropping suddenly, before gradually climbing back up again…always moving, never stopping and certainly never slowing down. The ebb and flow of Lupus has become a constant in my life.
With all of this being said, I still eagerly anticipate going into complete remission. The development of more effective treatments in lieu of a cure is among my foremost hopes for the future. I’m excited to see the reality of this in the present, with the recent FDA approval of BenlystaÔ. I applaud the efforts of Human Genome Sciences, GlaxoSmithKline and others within the medical and scientific communities. I can only imagine how painstaking it is to develop new research for such a complex disorder. I appreciate the time, energy and expertise they have spent to improve the quality of my life and others.
I’m grateful to Lea Jensen and Darla Shelden with the Lupus Foundation of America, Oklahoma Chapter for allowing me the opportunity to speak here today. I am equally grateful to Reps. Dorman and Pittman and Sens. Johnson and Shortey for their efforts in passing legislation in order to raise awareness. It is milestones like these that help to make Lupus as visible as possible and open the door for it to receive the recognition it deserves. It’s refreshing to know that the voices, which have been stifled for so long, are finally being heard.
I have often said that no two people with Lupus are alike; therefore, I believe that awareness and education create an opportunity to provide treatment and resources based on individual needs. My deepest desire is that everyone will come to know that “Lupus is REAL and it affects REAL people”Ô."
The video will be up by tomorrow.
Thanks so much for your support and until next time, "LEEP for Lupus!"
