It's time to celebrate the great support system around me and provide resources for those that sometimes struggle through daily activities by participating in this year's IN-PERSON Walk to End Lupus NOW! on April 23, 2022.
The past year brought us both more of the same and a revived newness that strengthens us all every day. I hope you have time to join the walk in-person or virtually to help solve the mystery of Lupus.
The walk also gives me the opportunity to provide everyone with an update on my personal Lupus journey. Before last year’s walk, I was just about to start a “new to me” medicine called Benlysta. With the blessing of health insurance resources, I was able to pay $50 per month for a medicine that costs some people $12,000 per month. Access to affordable, life-saving medicine should not be a privilege. Your contributions will directly lead to reducing patient expenses by building awareness and increasing funds toward necessary research.
I was excited, nervous, and extremely scared to try this potentially life-changing medicine. For the past 10 months, I have gone in for my monthly infusion with the hopes my Lupus Nephritis would disappear or at least show significant improvement. Unfortunately, it has not worked. But that’s ok because medicines and science are not infallible. While I will likely stop the infusions soon, I was blessed with the option at a low cost and I hope to see the continued research and development of new options in the near future.
That’s why having your support is so important. We do not know everything about Lupus and every year is a new opportunity to get one step closer to solving the cruel mystery. Your financial support stays in our region to fund research, support groups, and outreach campaigns that could lead to a cure. If you are not in a position to help financially, share our stories. Make sure people are aware that over 1.5 million people in the United States suffer from Lupus. In the near future, I know that I’ll be able to provide an update that I’m no longer one in 1.5 million and I’ll be able to thank each of you for that.
Help me and others say and believe that “I have Lupus, but Lupus doesn’t have me!”.
If possible, please join my team “Kickin’ Lupus Out This Joint” and consider donating to this year’s walk. If it’s not the right time for you to donate, that’s perfectly fine. You might know someone else you can forward this message to, or a company looking to make a larger contribution. Every day is a blessing and we should celebrate together on April 23rd!