Lupus Awareness 50 Years ago
Let’s talk about the purpose of Lupus awareness. I have been leading the charge for lupus change here in Ohio for over 35 years. I remember when I was first diagnosed with systemic lupus erythematosus at the age of 27. Wow-what a relief I felt when I finally had a name to what was causing me pure havoc since I was 9. I had been misdiagnosed for 18 years. It was near torture for me, but that’s a story for another time.
What amazed me at the time was that no one knew what it was. It was rare, there were no treatments and I was told I would most likely die in a few years. I could not find any literature on it and little research was being done. Seldom was it ever talked about, and it seemed no one knew anyone with it. Most doctors had little knowledge of treating it, nor did they see it often enough to diagnose it properly.
Although it was not a commonly known disease in the late 1970s, there were over 40 small grassroots organizations across the nation that saw a need to bring attention to lupus. Those small organizations gathered together to create a National Organization to take on the task of finding the cause and a cure for lupus. This organization is now known as the Lupus Foundation of America, Inc. and is based in Washington DC. These groups came together because, like me, they had family members who were diagnosed, and the need to fight this disease was great. They rose to the challenge and together they made a difference in the fight against lupus.
Lupus Awareness Today
Today, most people in the US have now heard of lupus. About 60% may even know someone who has lupus, but still….. they do not understand what lupus is and what it does to a person. We have made great strides through the years, but we have much more to do.
Thus, the purpose of Lupus Awareness Month is to raise knowledge about lupus among the general public. Because until we all know lupus and understand it, there will be no lupus.
What Can I do?
If you are impacted by lupus, please create that famous “elevator speech” to share with everyone you know. To know lupus is a step forward to finding answers, finding the causes and viable treatment, and ultimately the eradication of this mysterious disease that now impacts over 60,000 Ohioans.
I was sitting in our conference room the other day and there was a moment that overcame me. I stood up and moved closer to the walls that bore the plaques of names of those who passed away. We started making memorial plaques about 12 years ago. As I read the names, chills ran up and down my spine.
I remember most of the names on these plaques. I remember these brave lupus warriors. I remember their wars with lupus. Many had multiple health challenges, as we all know too well that we usually don’t just have lupus. My eyes began to flood. I was alone in the room….. or was I? It was surreal. I bowed my head and looked to the heavens and asked God… Why? Why is the fight so long and why is the loss so great? Why am I still here? I should have been gone years ago. Where are the answers? We have so many questions. Who is going to help and when?
The silence broke when my phone rang.
It was my husband. He wanted to know where I was, and why I was late coming home. I told him what I was doing and in an attempt to calm me down he said. “Do I need to remind you, that there is no I in the word lupus, but there is an US!”
I giggled; this is a line he stole from me. I say it often. I know I cannot forever lead the charge for advancements in lupus care and understanding, BUT I can keep asking all of you to do your part in creating change.
Remember you are the “US” in lupus!
Together we must continue to spread awareness about lupus. Someone you know has lupus. Could it be you? Your sister, your mother, your daughter, your son, your child…
Everyone must know lupus for there to be no lupus. Grab your purple shirt and start spreading the word about lupus. We got this. And we will keep spreading the word in memory of those who left us too early.
Now go out and be a lupus warrior! May 10 is Put on Purple Day. Use your social platforms to share your story! Show others there is help out there, by sharing what we post. You do and can make a difference; remember you are the US!
Click here for more ways to get involved in spreading lupus awareness with our chapter!