I am a systemic lupus patient, having fought this disease for 30 years. I also have underlying rheumatoid arthritis, which adds fuel to the fire. I serve as a volunteer board member with the Lupus Foundation of America, and I took on that role because I’m tired of autoimmune disease being overlooked, misunderstood and underfunded.
Of all the diseases in the world, those of us with autoimmune disease get the least amount of research, the lowest amount of funding and have the most misunderstood illnesses on the planet. I would say even more than misunderstood, just lacking awareness.
I did my own research last year, over the summer, for 3 months, where I talked to 100 different people, in different settings, from restaurants, to people I know in my office, to concert venues and sports arenas, and grocery stores. What I found is what I suspected. Virtually no one knew exactly what systemic lupus or myasthenia gravis or rheumatoid arthritis was. In some instances, they had heard of one or more of those diseases, but were absolutely clueless as to what the life was like for someone with autoimmune diseases. In some instances, people hadn’t heard of any of the above-mentioned at all. Some said that they knew what arthritis was, but they weren’t tuned into what rheumatoid arthritis was.
I am a legal professional by day. That’s my job; that’s what pays the bills. It’s not my passion, though. My passion is helping those of us, one in 10 on the planet, with no hope for a cure at present, to make our voices heard and to have our diseases recognized more fully. Ours are the only group of diseases for which there is absolutely no cure.
I think that was the thing that hit me the hardest when I was diagnosed. Granted, some of these diseases can be less severe than others. Let’s be honest though, any disease that you’re going to be dealing with for the rest of your life is overwhelming. We learn to deal with it, but for those of us that are fighting some of the more challenging, autoimmune illnesses, it gets difficult to stay positive. It’s tough to find the energy to stand your ground against these illnesses and not feel a little depressed about it.
There are so many factors that people probably don’t even think about when it comes to autoimmune disease. I said one of them, which is 1 in 10 people on the planet have some form of incurable, autoimmune illness. That’s a lot of people! The next one is really overwhelming to me, especially because of these celebrities and influencers who claim to be so pro-woman, but won’t lift a finger to help, particularly, when many of them have autoimmune diseases themselves.
Autoimmune disease is a leading cause of death in women in the U.S. Children’s cases are up 600% over the last decade. The therapies and drugs, while they are getting better and are developed more frequently than they were 10 years ago, are still few and far between compared to the research and new medications and therapies that are coming online for some of the other diseases.
I simply don’t understand the complacency, however, when it comes to promoting awareness of autoimmune diseases. I don’t understand why more people aren’t fired up about this. The rate of diagnosis each year, globally, for autoimmune illness, is somewhere between 8% and 12%. That’s a pile-on to what already exists. Yet, there doesn’t seem to be any real urgency around it. It seems that we still haven’t been able to say definitively what the causes are. We know autoimmune diseases are unique to each person’s DNA, which is why they’re impossible to cure and difficult to treat. Things are better than they were but not nearly good enough.
I’m just tired of sitting back and watching the clock tick down on my life, while I’m diagnosed with more symptoms. That’s why I became a volunteer board member with LFA. It’s given me a bit more of a voice and even though I feel like trash most days, I somehow find a way to start reaching out to people to say, listen to me, please, this is a problem!
I’m on a campaign effort right now, and I’ve been fortunate enough to be connected with a very amazing nonprofit PR firm, that is helping with this effort. They are helping to reach out to various music artists living with these diseases, to try to get them on board with the campaign.
I’ve been trying for 5 1/2 years to reach out to artists who have blatantly stated that they are struggling with autoimmune illness. They talk about their stories but, so far, I haven’t been able to connect with any of them that are willing to help with this. I’ve worked on charitable events in the past and never had this type of non-response. I guess because I’m not famous, there’s no incentive to talk to me about it. I know they get a lot of requests, but this hits them right in their own backyard!
This brings me to why I’m posting this. I know the struggles of these illnesses. I live it every day. There are days that I cannot get out of bed, and days I cannot go into my office. I’m sure other people go through that as well. I lost my fiancé over this disease because he didn’t understand it and walked away. It was devastating. I am certain that there are other people in this support group whose family members and friends don’t understand what they’re going through, as well. I lost a boatload of friends because I’ve had to cancel plans at the 11th hour, when I confirmed the night before that I would be there. I just don’t get invited like I used to, because people think I’m just blowing them off.
I’m asking that if you have something that you’re willing to share, I would love to know your story to support what I’m trying to that this isn’t just me saying this. There are multiple people, speaking out and saying this is real! These are daily occurrences that we go through. These are hurtful events or painful situations that we’re in. I want them to understand that these diseases, while most are liveable, aren’t some flu-like symptom and you carry on with your life. Your life has to change as a result of being diagnosed with autoimmune disease, and it has to change for the rest of your life, not just while you have a flare.
I want them to see the ignorance about these diseases, so maybe we can get some people to step up and be a voice, make some real progress, and all of us can be true advocates for this cause. We’re battling every day!
I’m not dismissing the fact that there have been significant advances in research and medications, including biologics. What I am saying is it’s not enough and it’s not moving fast enough.
On average, it still takes about 6 years for someone to be diagnosed with lupus; that’s insane! It took 12 years to receive my diagnosis. 12 years of hearing, there’s nothing wrong with you. It’s all in your head. 15 different doctors, across 3 different states. No one should have to go through that and suffer that long untreated. All because research isn’t moving fast enough to help.
It would be amazing if I could get some input from people here who are walking the same walk with me. I would love to see some musicians, actors and influencers come on board and agree to help with this campaign. It’s a social media effort. It will require very little effort from them. We’re even sending them the tools in advance, so they really just have to post to their social media pages.
I don’t want to go into the specifics of it yet, because we’re fine tuning the process, but it’s very straightforward and, if it works and we can get cooperation and participation, this could be really amazing!
I’ve also had the ability to address the members of the MO House of Representatives about this effort, which was great. So, if you’re willing to share any part of your life wirh these monster illnesses, or something you would like to see changed to help those of us battling these diseases, please share! God bless! Stay strong & keep up the good fight!
Yvonne
#LupusStrong
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