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I was diagnosed with Lupus in 2008. I’m thankful that I have great doctors that were able to diagnose me with Lupus Nephritis IV quickly and start a treatment regimen within weeks of my diagnosis. Even with that, my body did not cooperate and I was hospitalized for five weeks before things were a little more controlled. Today I’m on far less medication than I was a year ago and I completed a round of chemotherapy. I’m in remission and I couldn’t be happier! I didn’t think this day would come. Before “diagnosis Lupus” was a word that I didn’t even know. It didn’t run in my family and nobody in my circle knew what is was so I started to do some research and came across the Alliance for Lupus Research. I’m proud to be a part of the Alliance for Lupus Research’s Get In On It campaign to help raise awareness for this disease. The organization’s help is unequivocal. It raises awareness that is helping more people understand the disease and its effects. It also uses 100% of the money it raises to funds research programs* that for the first time in decades has promising lupus drugs in the pipeline. I want people to Get In On It with me and be part of an organization that is doing amazing things for lupus patients everywhere.
*100% of all donations received go directly to support lupus research programs because the ALR Board of Directors funds all administrative and fundraising costs.
“I had always been healthy…then all of a sudden I received a diagnosis of lupus, and I didn’t know what the future would hold for me. The physical side effects of lupus are often worse than the actual pain. At one point, I lost 20 pounds and was so skinny. But my face was very bloated and the kids at school were petrified to talk to me. As a teen, that took a toll on my self-esteem, too. I am very interested in learning as much as I can about lupus and other diseases…and how important organizations like the ALR work to find cures.”
“Having nearly died twice has given my life a purpose. I want to help others living with lupus. I don’t feel sorry for myself. I’m happy to be alive. And I’m happy to talk about lupus and the effects it has. It’s exciting to me that the ALR exists because it is solely focused on lupus research — in fact, I always tell people that 100% of their contribution will go directly to research. This makes me more hopeful that new treatments and a cure will be discovered.” — Evanne
This November will mark five years that I have been living with lupus. I was 19 years old, fresh out of high school, and I got hit pretty bad with my first flare up and found out it was lupus nephritis; I went right into chemotherapy. I have been through over five rounds of chemo to treat my lupus, and I am thankful that it is under control today. I am still on medication, but I hope to be in remission soon. Since being diagnosed, one of my ultimate aspirations is to have a child, because I know it will be even harder for me as a lupus patient. And that is why I am proud to be a part of the Alliance for Lupus Research's Get In On It campaign and help raise awareness of this disease. Organizations like ALR give all of us lupus patients hope that our prognosis in every aspect, including having children, will improve with more reasearch. I want people everywhere to be reminded that things like having a child or not having to take medication everyday is something they should always be thankful for. I encourage everyone with my story to Get In On It with me, and you too can give hope to every lupus patient out there!
The opinions expressed in these materials are held by the speaker and do not necessarily reflect the views of the Alliance for Lupus Research.
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