I’ve always been a curious person. Curious about how things come to be. I love to learn and expand my knowledge in anything my brain can get its hands on.
Chris Milazzo – Events Assistant
When I got hired at the LFA, GOC, my knowledge on lupus was slim. I knew it was an autoimmune disease that had harsh side effects and it affected public figures like Selena Gomez and Lady Gaga. Though, I never knew how it affected the person and their personal life. Lupus isn’t something that is talked about a lot in the media. Being the curious person I am, I want to learn more about lupus.
On September 7th, the LFA, GOC held a town hall for lupus patients and families of the patients. The town hall was sponsored by MetroHealth and featured a whole panel of physicians who were there to answer any questions one might have about lupus. I was at the event to help set up the space, but when I was there, I sat through the entire talk and listened to everything. It was eye opening to hear so many questions that have never come as a concern for me like protecting yourself from UV lighting. But, I also drew inspiration from listening to patients’ stories about their journey and not letting lupus define them.
We also recently had our Walk to End Lupus Now event in Cleveland on September 14th. We had the butterfly stroll which was a quick walk around the Flats East Bank and then our regular route. The route was a big loop that started at the Flats, brought you through Settler’s Landing Park, through downtown Cleveland, then ending up back at the Flats. The biggest challenge of the walk was going uphill to reach downtown. From the bottom of the hill, you could see how uphill it was. It took a lot of strength to get up the hill.
About a week after the walk, a few participants came into the office and we got to chatting about the walk. These individuals were lupus patients and were explaining the struggles they faced when completing the walk. They were telling the team that the walk was hard on them physically, causing them to throw up at certain points like at the top of that hill. They continued by saying that though it was hard, they wanted to push themselves and complete the walk. When I heard this, it was made very clear that lupus patients don’t let this disease define them. It’s a challenge they face on a day to day basis, but they fight through the pain because they don’t let lupus control them.
With this being said, I’d like to hear from more patients and their stories about their fight against lupus. If you have a story about your battle, please feel free to email me at chris@lupusgreaterohio.org. I’d love the chance to interview you and learn more about your story.