September 6, 2024 —
Jennifer shares her mother’s lupus journey and the impact of LRA-funded research.
Growing up in the New Jersey suburbs, Jennifer Young never looked at her mom as “different”. In fact, Jennifer remembers her mom juggling motherhood and a full-time job with grace. Life was happy and seemingly normal. But as the eldest sibling, Jennifer saw signs that something was wrong with her mom.
“By the time I was eight years old, I noticed how tired my mom was all the time, the joint pain she was suffering, and the rashes and sores on her skin,” recalls Jennifer. “My parents sat us down and read us a book called When Mom Gets Lupus to help explain the disease and make it feel less scary.”
Jennifer’s mother was diagnosed with lupus at the age of 21. Bouts of severe fatigue and arthritis led her mother’s doctor to send her bloodwork out to the Mayo Clinic – the only place in the country conducting lupus tests in the early 1980s. Due to a severely low platelet count, her mother was hospitalized for a month, received a bone marrow transplant, and was treated with high-dose steroids and chemotherapy. Despite these difficulties, Jennifer points out that her mother managed to graduate and get married.
That’s before her mother encountered another hurdle: doctors told her she could have difficulty getting pregnant and would likely not be able to carry a baby to term.
Jennifer shares, “even though my mom was told that she might not be able to have a full-term delivery, she persevered and had three healthy daughters.” Jennifer helped her mom more and more over the years, conducted a lot of her own research, and even built a lupus website as a school assignment. This was the pinnacle moment when she decided to do more for the lupus community.
Jennifer can pinpoint the day that her mom’s health took a turn for the worse. It was Jennifer’s high school graduation in June 2003, which fell on a hot summer day. By this time, she knew her mom’s “lupus flares” – episodes of swelling, rashes, painful joints, and sickness that could last days to weeks – and she worried about the heat being a trigger. It was worse than anyone could have imagined; the flares lasted for four years, and Jennifer eventually moved back home from college in 2007 to help her mom cope.
Thankfully, 2011 marked a turning point. LRA-backed research supported the FDA approval of Benlysta® (belimumab), the first lupus treatment in a half a century to offer patients hope. Jennifer’s mom started treatment right away and still receives regular infusions, which have kept her symptoms at bay, allowing her to be a dear “Mima” to her four young grandchildren.
“I don’t have lupus, but it has been part of my life for decades,” explains Jennifer. “I’ve seen first-hand how vital it is to have a support system. My mom soaks up the energy of those around her and it’s the same for me. My family’s experience has given me purpose and motivates me to help unite others. The internet can be an overwhelming place, whereas the annual LRA Walk with Us to Cure Lupus is a space where people can ask each other questions, bond over war stories, and relate face-to-face. For anyone living with lupus, my advice is this: don’t lose hope, find your people.”
Jennifer has long supported the Lupus Research Alliance (LRA) as a passionate Walk with Us to Cure Lupus committee member and frequent team captain, raising more than $30,000 on behalf of her mom. And her team “Young@Heart” again joined nearly 1,000 others at MetLife Stadium for the LRA’s 2024 New Jersey Walk with Us to Cure Lupus.
