July 22, 2021

Leslie Meehan has lupus, but she is running the 2021 TCS New York City Marathon for her mom and all the others she knows who live with the many different forms of the disease. “Raising money for research is the best way I can help everyone.”

Leslie continued, “One of the reasons research is so important is its heterogeneity – how differently lupus affects each person. I have flares when I feel like I’ve been run over by a truck, but I’m one of the lucky ones because most of the time I am able to work. But I watched my mom’s life collapse from being a healthy nurse to being almost unable to function.”

As Leslie pointed out, lupus varies so widely with symptoms from mild skin rashes to organ failure.  “There are only a few medications for all the types of lupus.  Doctors need to have better ways to treat the entire range of people from ones like my mom to people like me.”

Despite several positive ANA tests, it took two years for her mom to be diagnosed with lupus as the last consideration after multiple sclerosis and syphilis.  No longer able to work, she sleeps 15 hours a day and lost most of her eyesight in one eye. Madeleine has been hospitalized several times with damage to her kidneys and liver.

That’s why Leslie tends to downplay her own lupus.  In comparison her main issue is flares that are mainly triggered by stress. She knows when a flare is coming when she notices a butterfly rash on her face. She describes body aches that are like having the flu “magnified by 100.” Side effects of treatments have caused some vision loss and weight gain.

Yet she is determined to run the Marathon.  To achieve this goal, Leslie is living the healthiest life she can, substituting proteins, fruits and vegetables for what she calls “white foods like rice and potatoes.” And drinking seltzer instead of the Coca-Cola she loves. She has worked hard to shed the pounds she put on while taking prednisone and keeps challenging her body by lifting weights, running and swimming.

Leslie understands only too well that not everyone with lupus can run a marathon.  Her advice is to try to do what you can. “If you can’t run, walk. If you can’t walk, swim.” And she suggests finding your triggers – like sunlight, certain foods, stress — so you can try to avoid them.

“Lupus is definitely a long journey and won’t be a sprint. But it’s not a death sentence either. We can take care of ourselves the best we can, know our limits, and allow a support system to help.”

Another reason Leslie runs is to raise awareness for what she finds a widely misunderstood disease. People always say you look perfectly healthy, like nothing’s wrong.  She picked the Lupus Research Alliance because “funding research is the best way I can help my mom and other people I’ve met who are not as lucky as me. I am running for a charity that means something to me personally and because I care so much, I know I will stick with it all the way until I cross the finish line on November 7.”

As the only organization representing the lupus organization in this iconic race, the Lupus Research Alliance has spots for additional runners to join our Team Life Without Lupus.  For more information, click here or contact Team Organizer Lana Munoz at LMunoz@lupusresearch.org.