Jul. 10, 2018

Walking Toward an End to Lupus

When Marina Famer was diagnosed with lupus at the age of 14, she had never heard of the disease.  She was hospitalized for two weeks on strict bed rest with blood clots.  “I was scared and I didn’t know what to expect or where to go from there,” Marina shares. “I had a difficult time understanding lupus myself, so it was even harder to explain it to my friends and family.  Some days I feel like people will never get it.  You have to constantly remind them that you are sick – even though you may not look sick.  You don’t want to be different but deep down inside you really are different.”

Marina is now 27 and has coped with lupus for 13 years.  “When I look back on that time, I realize that lupus had a bigger impact on my life than I like to acknowledge.  I loved school, but brain fog made studying and test taking difficult. I was exhausted all of the time and I wasn't able to maintain the appropriate grades to stay in the nursing program because of the impact on my health.”

But through the ups and downs of lupus, Marina has remained positive.  She loves to work out to relieve stress, loves to hike, and likes to watch movies noting that it is sometimes a nice escape to focus on the character’s problems. Through it all, she considers herself lucky, but worries about the future, “When I hear some of the stories of other people with lupus, I am grateful.  But when you live with a chronic disease, you never know what can happen next.  I think that is the most difficult challenge.” 

Marina actively works to help increase awareness about lupus and fundraise for the Lupus Foundation of America. She formed a team-- the Lupus Lunatics- for the Walk to End Lupus Now NYC in 2013, and since then, the team has participated in NYC and CT walks. She also hosted a painting party in 2016 and a Panera Bread fundraiser in 2017 in her hometown of Danbury, CT. as fun ways to raise money and get her friends and family more involved.

When Marina became more vocal about her involvements, co-workers and acquaintances began sharing their lupus stories with her.  “I want to be open about my lupus so others feel they can share too.  It’s difficult to talk about lupus, and to raise awareness about this disease.  If I talk about it, maybe someone else will feel empowered to do the same.”

Marina and her team will walk in Norwalk on October 14.  Marina shared about the experience the first time she attended the walk.  “It was inspiring.  I never really knew anyone else with lupus, but standing in a huge crowd of other people who understand what you are going through is a powerful feeling.  I am really looking forward to walking in Norwalk again with an even bigger team than last year!”

Marina also hopes that her work as a fundraiser and advocate will lead to new discoveries.  “I wish for a cure.  I know that I will live with lupus for the rest of my life, but my wish is for it to be more than just 'manageable'. I want new treatments so I can wake up one day and say that I feel great.”

Marina is helping to fulfill the Lupus Foundation of America’s vision of a life free of lupus, and you can help too.  Join Marina on October 14 at Calf Pasture Beach at the Walk to End Lupus Now CT – Norwalk.  You can start a team, walk as an individual, donate, or volunteer.  For more information, contact Antonella Leone-Giamei at .(JavaScript must be enabled to view this email address) or 866-225-0348 ext. 702.