My ALPHA journey…

“But you are a chosen people, a royal priesthood, a holy nation, God’s special possession, that you may declare the praises of him who called you out of darkness into his wonderful light.” (‭1 Peter‬ ‭2‬:‭9‬ ESV)

Last week, I had the amazing opportunity to spend a few days at the Lupus Foundation of America. I was one of three patient representatives of the Global Advisory Committee with the ALPHA project (Addressing Lupus Pillars for Health Advancement). The purpose of this project was to bring together physicians, researchers, pharmaceutical developers and Lupus patients from across the world (the US, the UK, Korea, and Germany) to discuss actionable solutions to the top leading barriers in the Lupus community today. I’m so excited about the work we were able to do in those two days, identifying barriers in three key areas: drug development, clinical care, and access to care. The experience itself was amazing to be a part of, no doubt. Especially because as a patient, I knew that my voice was 1) being asked for 2) heard and 3) valued. I appreciated the fact that everyone on the committee and the LFA staff genuinely wanted the opinions and thoughts from me and the other two Lupus patient representatives. Not only did they want us a part of the conversation but they wanted us a part of the solution. As a patient advocate, it feels great to know that the work that is being done is truly on behalf of those of us who are living with this chronic illness every day of our lives.

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I thank God every day for choosing me in this season to play my part in the Lupus community and I never want to take any of these opportunities for granted. Those two days were so exciting and productive that I almost – just for a second – forgot that I had a chronic illness lol However, as soon as I got home, I was instantly hit with overwhelming pain that reminded me, I DO have Lupus. Hello, reality. After spending two amazing days advocating and talking about Lupus, I’ve just spent the last three days on bed rest because of it lol. I know it’s not funny but it does seem a little ironic AND a drastic reminder of WHY I’ve fallen into this advocacy work in the first place. I am reminded that for every bad day I spend on bed rest or with fatigue or in pain, I will eventually come off bed rest and gain the strength and energy to continue this fight to thrive. I’ve adopted this perspective… A temporary setback is usually a setup for a comeback. So, for as long as I am able, I will continue to look Lupus in the face and say, “not today.” I will continue to trust in folks like the LFA and their initiatives to create opportunities for Lupus patients to live great lives and I will forever give of myself to advocate for us all.

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ALPHA GAC

Click here to read more about LFA’s ALPHA project and the Global Advisory Committee.

AND click here to see a little Facebook live interview I participated in after our committee meeting last week.

All my love, Syd