Wow. I think it might be a month or so since my last post. While nothing really MAJOR has happened with me or my health, I’ve been trying to get more involved in lupus/patient events.
I’m very interested in (obviously) lupus awareness and education, but I am also generally interested in making patient’s lives better. While I have always been open about having lupus, I haven’t ventured into being involved in “outside things” more formally. I suppose this blog and my social media presence has been a start, but I also want to see how I can be more active in improving life for people living with chronic illnesses.
So for the past month or so, I’ve been taking more initiative to find out how I can contribute:
NYC Alliance for Lupus Research Walk with us
I walked in the 2015 NYC Alliance for Lupus Research Walk with us to cure lupus. 100% of the money raised through this walk goes to lupus research. This was my second year participating and it was great to see a lot of folks that day (which was sunny, but VERY cold).
I raised $1,290 (up from $750 the previous year), which I think was due to me sharing my blog. It proved to be a great way to have more conversations with people I don’t see very often.
I also attended interesting conferences about patient education/engagement and digital health. There are very cool things happening in the world of medicine and patient care. I’m very encouraged by the focus on patients and making sure we are involved in all aspects of changing healthcare and not only being the recipient of healthcare.
At the NYC MedicineX pop-up event I met some patient advocates, including Cyrena (an ePatient scholar with lupus) and Logan from Flaredown.com. I love the idea behind Flaredown. I hope this idea will catch on and I’ll get to use it soon. It’s developed by a fellow spoonie and really ‘gets it’ as far as what we need to track.
I feel so hopeful and positive after these events because it feels like people are paying attention to how patients live on a day-to-day basis and our value in improving the system of care. The word empathy was used many times in these conferences as far as making sure the entire healthcare system understands those of us who use it often: healthcare professionals, healthcare institutions, educational institutions (teaching doctors about empathy), researchers, and even insurers.
I hope to attend more of these types of events. It’s something positive for the spoonie community now and in the future.