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 Virtual Walk to End Lupus NOW! on June 5, 2021.
"What a year it's been!" could be copy and pasted for pretty much anything right now. Living with an autoimmune disease during a pandemic was quite the experience. I don't think it really hit me until I was blessed to receive my first vaccine in January and the booster in February. I know we aren't completely in the clear and precautions are still necessary, but after receiving the vaccine my mind experienced a sense of calm that I had not realized I needed. I continue to be blessed with healthcare resources and caring family and friends that support me even when I don't realize I need it.
Lupus remains generally manageable for me (with the right medicines and care), but my disease does have some "hidden" factors that doctors continue to try and solve. That's why the Lupus Walk and awareness efforts are so important. Your participation and contributions help provide support groups, research opportunities, and resources for our community. These walks directly lead to research efforts for new medicines and lower cost care for our neighbors.
In just a couple of weeks, I will actually be trying a "new to me" medicine called Benlysta to hopefully solve some of those "hidden" ways Lupus effects my body - specifically, my kidneys. In December 2020, Benlysta became the first drug approved by the FDA for Lupus Nephritis. Great news for the Lupus community, but also not an option for everyone. Magnified even more during the pandemic, I'm lucky to have health insurance resources that provide me easier access to Benlysta for around $50 per infusion (maintenance infusions will be once per month). Those without insurance would be forced to pay over $12,000 per month for a medicine that could literally be life-changing. 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.
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 June 5th! Ari and I plan to host a thank you BBQ on the day of the Virtual Walk at our house. More details to come!