By Keysha Drexel
When Katie Held was a student at Mountain Brook High School, she had a secret that she kept very well.
Like most teenage girls, she didn’t want to be perceived as different, but the butterfly-shaped rash on her face and extreme fatigue and pain made it difficult for Held to feel like her peers.
“It took me a very long time to accept that I had lupus,” said Held, who is now 30 and lives in Vestavia Hills. “I didn’t tell anyone in high school or in college because it was something that I was in denial about and something I just wanted to avoid. Now, I’m just the opposite. I want to tell everyone about lupus so we can find a way to cure it.”
To that end, Held will participate for the fourth time in the Walk to End Lupus Now at Veterans Park in Hoover on March 29. The Mid-South Chapter of the Lupus Foundation of America will use 90 percent of the proceeds of the walk to increase lupus awareness and education.
Held was just 17 years old when she was diagnosed with lupus. There was no history of the autoimmune disease in her family, and Held sought a second opinion after she was told she had lupus.
“I think part of it was being young and part of it was just being afraid of how it would impact my life. I didn’t want it to limit me in any way, so I just tried to ignore it and live my life how I wanted to live it,” she said.
Held said during the first few years after her diagnosis, she didn’t take her medications regularly and rarely gave herself time to rest on her bad days.
It wasn’t until she was about 21 years old that Held sought answers on how to deal with her diagnosis.
“I think most people were like me when I was first diagnosed–they just don’t know what lupus is or how debilitating it can be,” Held said.
Unpredictable and often misunderstood, lupus is an autoimmune disease where the body’s immune system becomes hyperactive and attacks normal, healthy tissue. Lupus causes inflammation, swelling and damage to the joints, skin, kidneys, heart and lungs.
“It’s your body attacking your body, and it can be brutal,” Held said. “For me, lupus affects my kidneys, joints, skin and thyroid. It is, for the most part, under control at this time but remains a daily struggle.”
That struggle means Held takes more than 20 pills a day and gets monthly injections from her doctor. There are days when she is in “head to toe” pain and other days she has to miss work to go to a string of doctor’s appointments.
“My family, the Kraselskys, leases the shoe department inside of Gus Mayer at the Summit,” Held said. “Luckily, my boss, who is my dad, is very understanding when I need a day to rest or to work from home or go to a million doctors’ appointments.”
Held said one of the most challenging things about living with lupus is that it is often an “invisible disease.”
“You can go in and out of remission. You can have days and weeks where your symptoms flare up and then days where everything seems fine,” Held said. “People say, ‘Well, you don’t look sick.’”
While her outward appearance might not always indicate how tough her battle with lupus has been, Held said she has been changed by the journey in many ways.
“I feel that my personality has changed and how I go about each day has really changed,” Held said. “I cannot do as much as I used to do. I have learned that my ‘normal’ is very different than it used to be.”
Part of her new normal is not all bad, Held said. She said she has learned that she is stronger than she thought she was and that it is okay not to be strong all of the time.
“It was very hard for me to rely on others and ask for help, but I’ve learned that it’s okay,” she said. “To live my life to the best, I surround myself with the most amazing and supportive family and friends who are understanding of what I can and cannot do.”
Held’s friends and families will join her at the Walk to End Lupus Now event and will be sporting their “Team Katie” purple T-shirts.
“There are so many reasons the walk is important to me,” Held said. “I want other people with lupus to look around and realize that we are not alone and that we can fight together to make a difference, to raise awareness and to raise money for research. There are so many people suffering, and we need to find a cure.”
The Walk to End Lupus Now starts at 10 a.m. at Veterans Park, 4800 Valleydale Road. There will also be live entertainment, complimentary food and drinks and fun activities for kids.
For more information, visit walktoendlupusnow.kintera.org or firstname.lastname@example.org or call 877-865-8787.