1.5 million people in the US are living with Lupus*
90% of lupus patients are women*
20% of lupus patients have a parent or sibling that already has or may develop lupus*
Lupus is 2 to 3 times more prevalent among African-Americans, Latinos, Native Americans and Asians*
5% of children born to lupus patients will develop the disease*
“There are more Americans living with Lupus than cerebral palsy, multiple sclerosis, sickle-cell anemia, cystic fibrosis and AIDS combined.”
I’ve heard this statement many times before but today I ran the numbers. When you add all of the estimated numbers of cases for these five diseases it comes to around 1.3 million Americans. But if you ask anyone random person if they know what lupus is many will say they have heard of it but don’t really know what it is. WHY?
Why aren’t there more public service announcements about Lupus, like many of these diseases? When you think about it there are even more people affected by this illness. Lets say that each of those 1.5 million Americans has 5 friends and family members as a source of support. That is 7.5 million Americans that are watching their loved ones go through not only the myriad of symptoms that are exhausting at best but also the many treatments that are sometimes worse than the disease itself. So, that is a total of 9 million people in America today that are living and coping with Lupus. That number is mind boggling. How is it possible that so many people are affected by this illness and there hasn’t been a mainstream movie or book or something to bring this into the national spotlight? Yes it has been mentioned in every episode of House but they never really explain what it is but it has at least it got the name out there.
Truth is that it can take years and multiple doctors to finally get a diagnosis of lupus. It is one of the most misdiagnosed illnesses around because many of the symptoms mimic other diseases. It took me 9 years from the time I first started to notice symptoms till I was diagnosed. During that time not only did I try to rationalize symptoms away but so did my doctors. I had one doctor tell me that I was wasting her time and there was nothing wrong with me and I had others were convinced that I had the flu. I fell into a deep depression because I was sick, I knew I was sick and no one believed me. It wasn’t until a friend told me to go in because knowing is better than not knowing that I finally went to see my doctor hear in Hawai`i. I had convinced myself that my doctor here would treat me in the same way that the others did but I was wrong. She was thoughtful and understanding and was one of the ones to finally give me answers. When I met with my rheumatologist I was glad to find out that he too wanted to find an answer to what was wrong. I have had to change my medications multiple times and each one has a bunch of side effects that range from just annoying to completely debilitating. Because of some of these treatments my weight has become uncontrolable but thankfully the main culprit for that one is now gone from my regieme. And now that I have been feeling some relief I can do something about my weight, and it’s not out of vanity but simply because I am uncomfortable with myself.
There are times that I can see just how much all of this has affected George and the kids. There are days that I can play with the kids the way that I always wanted to and those days are wonderful. But then I have days that they come to me to play with them or pick them up and I can’t. Those are the days that I want to just break down in tears and I normally do after I get the kids in bed. This is our life now. We have had to adjust for everything from daily schedules to how we bathe the kids. I know that even though it’s not always visible, the fact that my family has to watch me go through this hurts them too. And my wish is that I could be able to live my life without Lupus, that my children will be able to see me healthy in their lifetime. I wish that I will get to see as much of their lives as possible. I wish that the medical community finds a cure. And I wish that Lupus awareness spreads to the ends of the earth. Because if people know and understand lupus then I won’t be invisible anymore and neither will the other 1.5 million people like me.
*All statistics taken from The Lupus Foundation of America