'Still I Rise:’ A Teen's Life With Rheumatoid Arthritis
17 year old finds help, hope from pediatric rheumatologist
“Still I Rise.”
On those mornings when Erin Hale hurts more than any 17 year old should, she looks at her left wrist and those three words inspire her to get up out of bed.
Yes, Erin is too young to have a tattoo in the state of Texas without her parents’ permission.
But that’s the give and take for someone who is also way too young to struggle to her feet on some mornings because of her battle with rheumatoid arthritis.
A year ago Erin stood out because of her athletic prowess. She played select soccer and volleyball, as well as ran track and cheered for her high school. She excelled at almost everything she did and lived the type of life most high school students only dream about.
Then one morning, she felt pain in her left knee and noticed it was swollen. Erin’s parents, David and Paige, thought it most likely a sprain and nothing too serious.
But the pain persisted and spread throughout her body until the family felt it was time to see a doctor. She saw her pediatrician in Abilene and a local orthopedic doctor.
Erin’s knee was drained. Tests were performed. Lab results reviewed. More doctor visits. And still no answers.
“Mom, something is really wrong,” Erin remembers saying. Over the next few weeks her leg became so swollen that Erin couldn’t walk on it. She said it felt like something inside her leg was going to bust or break. The pain was excruciating and she quit all of her extracurricular activities and even quit going to school on a regular basis.
“I was beside myself because we had no idea what was going on,” Paige said. “She went from a cheerleader and soccer player to totally debilitated in a month.”
The family’s pediatrician in Abilene, Dr. Robert Wiley, suggested the Hales travel to Cook Children’s for help.
David is an intensive care nurse in Abilene. He wondered what was wrong with his daughter like everyone else, but one thought lingered in the back of his mind.
“I wasn’t sure that she didn’t have leukemia,” David said. “I prayed each night she didn’t have cancer.”
Finally, the family found the answers at Cook Children’s they had been searching for when Erin was diagnosed with rheumatoid arthritis.
“My dad is a nurse and I just remember thinking, ‘Oh my gosh everyone seems really upset and about to cry. Should I be crying?’ I was just kind of numb,” Erin said. “I thought, ‘I’m 17 years old. I can’t have arthritis.’”
Once the diagnosis had the opportunity to sink in, Erin went through a grieving process that began with denial. But as time passed, she accepted her diagnosis as her new normal.
“A month or two afterwards, I realized that pills are something I’m going to have to take forever. This is real,” she said.
Armed with a diagnosis, now it was time to attack Erin’s disease. Maria Perez, M.D., would lead the attack. Dr. Perez is a rare find in this country. There are less than 350 pediatric rheumatologists in the United States.
“The first time I went to Cook Children’s I was in awe,” she said. “I thought this is where I’m going to work. Dr. Perez is awesome. Honestly, she is so awesome. I love her so much. I’m so grateful to her. She gave us the answers when no one else was there for me.”
Dr. Perez is a physician at Cook Children’s Rheumatology Clinic. The Rheumatology Division at Cook Children’s was established six years ago. The clinic treats children’s diseases most think are only for older people such as arthritis, lupus, vasculitis and scleroderma.
To treat her disease, Dr. Perez had to find the right combination of drugs for her. It took over a year of trial and error to find the right dosage and combination of medication for Erin.
“Dr. Perez had to find the right cocktail of medication to treat the symptoms,” David said. “The frustrating thing is there isn’t a cure. All we can do is treat the symptoms. Some days are better than others for Erin, but she is an extremely resilient young woman. That’s the thing that is most encouraging about her is how resilient she is.”
Since her diagnosis, Erin has been trialed on steroids, adalimumab and methotrexate, but finally found success with a combination of tofacitinib and methotrexate.
“Getting her insurance company to pay for tofacitinib was a challenge since it is only FDA approved for adults with rheumatoid arthritis,” Dr. Perez said. “It is a challenge to get insurance payers to cover the considerable cost of these meds (an average of $1,200 per month) since drug companies don’t invest in getting FDA approval for many children with rheumatoid arthritis.”
While the number of adults with rheumatoid arthritis is more than 1.5 million, most people do not realize that there are at least 300,000 children in the U. S. with arthritis.
“Getting control of a child’s arthritis early enables them to attend school and become employed full time,” Dr. Perez said.” One of every 6 adults with rheumatoid arthritis will become disabled within five years from that diagnosis. That is not an option in an adolescent whom is just beginning to go to college and join the work force.”
Even when she’s not at Cook Children’s, Erin calls or sends pictures of her swelling to Dr. Perez or her nurses. Those calls are usually returned within the hour.
And then there’s the tattoo.
Along the wrist is written the words, “Still I Rise” and along the arm is written in roman numerals, XXII X MMXV.
“I asked her what the Roman numeric date meant on her tattoo and she explained to me, that it was the date she was diagnosed with rheumatoid arthritis and it was the moment that defined her will to live life to the fullest despite her arthritis,” Dr. Perez said. “It brought me to tears to see this young woman display such grace and courage through her wish to show the world that she was not going to let this disease overwhelm her dreams and hopes. Children with arthritis have their childhood stolen, but in my 25 years of experience, I have been privileged to see them rise to the occasion over and over again. That is why Erin is such a special young woman.”
Erin asked Dr. Perez if she was healthy enough to get the tattoo. First problem though was she wasn’t old enough to get the tattoo. Erin begged her parents. They said no. Her dad may have even called it dumb a few times.
But Erin was persistent. Finally, a year later and when everyone was feeling good about her progress she asked again. After all, she’d been through her parents how could her parents say anything but yes.
Her disease has been hard on Erin both physically and emotionally. She says kids have bullied her since her disease, teasing her about her limp and asking if there was really something wrong with her.
But she has persevered. She has become closer to God and her parents. She gave up sports because of her arthritis, but spends her time now listening to music and reading the bible.
She hopes to become a speech pathologist and live the dream she’s had since the moment she first saw the medical center -- work at Cook Children’s. She wants to someday help people like she has been helped.
“I’m Ok now,” Erin said. “I’ve accepted the fact of who I am. You can either love it or hate. You might as well love it. God gave me this for a reason. I think it’s to teach others how get through adversity. I’m not going to shut everyone out or be mad or angry about this. I’m pretty alright with it now.”
About the Rheumatology Clinic at Cook Children's
It's hard enough to be a kid. At Cook Children's Pediatric Rheumatology we try to make it a little easier.
Most people think of things like arthritis, scleroderma or Crohn's disease as something that only older adults get. But kids get these and many other conditions as well. At Cook Children's, we here to help kids and teens with things like persistent arthritis and joint pain, symptoms associated with autoimmune diseases and much, much more. Click to read more.