When she was making the leap from junior high to high school, Haleigh Martinez found she could barely climb the stairs in her Gilbert home. “My hips and my joints were just killing me, I felt like I was 80 years old,” Martinez said.
When she was making the leap from junior high to high school, Haleigh Martinez found she could barely climb the stairs in her Gilbert home.
“My hips and my joints were just killing me, I felt like I was 80 years old,” Martinez said.
At 18, she’s now almost four years into her life with systemic lupus erythematosus, the most common and most debilitating form of lupus. But she is as active as any college freshman, enrolled in Arizona State University’s honors college helping to coach a synchronized swimming team, the Arizona Aqua Stars.
She still deals with joint pain and fatigue despite anti-inflammatory medication which keeps her symptoms under better control than most patients.
Despite that, she’s getting ready for the fourth annual Walk for Lupus Now on Sunday at Tempe’s Kiwanis Park.
Lupus is a chronic autoimmune disorder in which an overactive immune system essentially attacks the body and causes skin rashes, joint inflammation, and in severe cases can damage the heart, kidneys and other organs.
Ninety percent of victims are women in their childbearing years, and it disproportionately affects non-whites, for reasons that still aren’t understood, said Crista Kleppe, president of the Arizona chapter of the Lupus Foundation of America.
“Not a whole lot is known about this disease,” Kleppe said.
Martinez and her family had a steep learning curve after her diagnosis, she said. But once they learned about the most susceptible populations and that it frequently is diagnosed in girls around age 14, “My dad said, 'This is you, Haleigh. You’re the poster child for this disease.’”
The family soon discovered that Martinez’s sister Emily has a genetic predisposition for lupus, though she has not suffered any severe symptoms, Martinez said.
“She does get tired sometimes, but she’s 16. She’s doing the whole high school thing,”
Since her diagnosis, Martinez has had to adapt, with changes such as switching from swim meets to synchronized swimming because it’s easier on her joints, but she still works as a lifeguard in the summer, braving the sun that can be so dangerous to people suffering her disorder.
“I just handle it by wearing hats, sunglasses, gloves, shirts, staying in the shade as much as I can,” she said.
After graduating this year from Gilbert High School, she is now a biochemistry major at ASU and wants to go on to pharmacy school, so she can take on a role in drug research, for lupus and other disorders.
She realizes she’s relatively lucky; she takes one anti-inflammatory medication and a bunch of vitamin supplements, and hasn’t had to take the prednisone or go through chemotherapy, sometimes necessary to suppress the immune system to the point where it can rebound in a way that doesn’t make the patient’s life miserable.
Kleppe has been through both, and said the lupus walk’s primary purpose is to raise money for research to reduce or eliminate the need for such drastic measures. Last year the walk drew about 300 participants and raised $36,000. With the state of today’s economy she’ll be happy if they match that this year, she said.
Registration for the walk begins 8 a.m., with the competitive 5K run starting 9 a.m. and the family fun 5K walk 15 minutes later. Fees run from $30 per adult to $5 per dog, and there’s even a $25 “sleep-in” donation option. Participants can form teams and take pledges for the event, and anyone who raises at least $25 gets a free T-shirt.