Imagine a little girl in a plaid jumper sitting on a cold metal bench in the shade of a looming building, watching her friends run about the playground playing all sorts of games.
They laugh and scream.
On her knees- a stuffed pig made of fleece, filled with heated feed corn. She rests the hot package on her knees to help ease the searing pain.
She is sick, though she looks perfectly healthy. This little girl has psoriatic arthritis.
“I couldn’t do things like normal kids,” said Sophomore Allee Meier, “When we had recess I couldn’t run and play with the other kids. I had to sit by myself and watch all of them play, and have kids come up to me asking ‘What’s wrong with you? Why aren’t you playing?’”
In remission now, after years of pain and debilitation, Meier was diagnosed with psoriatic arthritis when she was six years old. It is one of the more rare forms of arthritis.
Arthritis causes the immune system to attack the joints. There are many symptoms that come with the disease, that might seem odd at first.
“The first indication [that something was wrong] was when she was about six, in first grade,” said Shelley Meier, Allee’s mom. “Her job was to feed the dog. He was a German shepherd. We had a big container that the food was in and she would take this scoop and scoop it out. She would say, ‘Mommy, my fingers hurt when I do that, it hurts when I do that.That hurts my hands.’ And I thought well maybe she just doesn’t want to feed the dog.”
Soon, it was apparent that wasn’t the problem. Allee’s discomfort began to progress and the apparent mystery disease began to affect her more and more.
“Sometimes it would be a tight pain, sometimes it would be shooting pain,” said Allee. “It started in my hands, every joint in my hand would hurt really bad, whenever I moved it… I couldn’t make a fist.”
Allee’s fingers began to ache and cause problems in her young life, but this was not the last way the disease presented itself. Soon, new symptoms appeared.
“She woke up one morning and she said, ‘Mommy my fingers really hurt.’ I looked down and her fingers were swollen and red, and I thought ‘That doesn’t look good, there’s something not right here,” said her mom.
The symptom Allee was presenting is sometimes called sausage fingers, because her fingers literally looked like red sausages.
It is a symptom of the break down of the joints. In arthritis, the joints are actually eaten away. The Meiers didn’t know what was happening to their daughter but they immediately began to seek out an answer. Unfortunately, a diagnoses was not quickly attainable.
“We made an appointment with her pediatrician, but he was unavailable, so we saw the Nurse Practioner,” recalled Shelley. “She took a look at Allee and said, ‘You know what, I did my residency at Scottish Rite Hospital and I’ve seen this before or something similar and studied about it in their arthritis department and this looks like she has arthritis.'”
The idea that Allee could have a disease that is usually identified with the old and decrepit, shocked her family. There was no time to waste, Allee needed prompt treatment.
“At first it didn’t really resonate,” said Shelley. “It was kind of surreal. I really didn’t have time to think about it a whole lot.”
The next step taken by the nurse practioner was to draw blood form Allee. This is something that Allee was going to get a lot of experience going through.
According to Mrs. Meier, the process was slow to gain a diagnosis and treatment. They got the blood work done and the next step was to go to Children’s Medical Center of Dallas, where they saw Dr. Madson.
“We went to see her for six months,” said Shelley. “At that time they started her on Naproxen. When we first started out it didn’t appear to be as active. The reason they take so long to diagnose it is that they want to see the symptoms over time. There are different things they look for, stiffness in the morning… She showed all the signs. It was actually kind of a text book case.”
After sending her to The Children’s Medical Center, one of Allee’s doctors referred her to Scottish Rite Hospital of Dallas, where she would receive more effective treatment.
During this transition period Allee’s disease began to progress. But there was still not a firm diagnoses.
“I would cry because it hurt so bad and it was so painful,” remembers Allee. “I felt like I couldn’t move and I would just cry laying on the couch because I couldn’t walk up the stairs to go to my bed. It was scary. I would say, ‘Mom why would God do this to me?’ because I couldn’t even comprehend, what have I done? Did I not clean my room enough? Mom told me, ‘It’s not all about us and that if you can help someone through this later, it’s all worth it.’ That what I live by now.”
It was difficult for the Meier family to watch their youngest daughter suffer so. It took six months for Allee’s doctor to properly diagnose her. These six months were extremely difficult for Allee, but they were crucial to the diagnoses.
Another part of psoriatic arthritis that makes it psoriatic is the fact that it is a twofold disease. Not only does the arthritis cause pain in every joint in the body, it causes a skin condition known as psoriasis to manifest in the patient.
“She also had psoriasis on the backs of her ears,” said Shelley. “Psoriasis is where the skin grows at a rapid rate and it causes scaling.”
With diagnoses in hand the Meiers set out to find someone who could treat a six-year-old with psoriatic arthritis. This is when a life changing decision was reached.
“Once she was diagnosed, Dr. Madson came to us and said, ‘We believe Allee is a perfect candidate to be a patient at Scottish Rite. So I’m going to get someone to sponsor her.’ You had to have a Shriner as a sponsor,” said Shelley.
Scottish Rite Hospital is a hospital in Dallas, TX that does amazing things for kids like Allee. The work they do helps to give children hope that they can beat their disease or overcome their disability.
“They helped a lot,” said Allee, “When you went there you felt like you had a chance for things to change and that maybe it could get better, and it did get better. I think it has affected my life a lot. I even became friends with the nurses because when you’re up there every few months for quite a few years you kinda get to know people. ”
Soon after becoming a patient at Scottish Rite, Allee was in need of a wheel chair. To many people, it would be astounding to think that a little girl would be in so much pain that she was not able to walk, but this was reality for Allee Meier.
“One of the hardest things for me was using a wheel chair because at first when you’re a little kid your like, ‘Oooo! Wheel chair fun! I’m excited about this!’ Then when you’re stuck in it and your mom says, ‘Why don’t you bring your wheel chair with you to school today,’ you don’t even understand how scary that is,” said Allee. “And how you feel like everyone is going to stare at you and look at you, and judge you. I remember we would take my wheel chair on long trips and I felt like I had to prove to people that I was sick. I felt like I couldn’t enjoy myself because I thought people were going to judge me and say, ‘She’s a kid. She’s faking it.'”
Allee’s wheel chair was actually another example of God’s provision and charitable hearts here in the DFW metroplex.
“As it [Allee’s disease] continued to worsen, we ended up going to Easter Seals and getting a wheel chair for her,” said Shelley, “They provided a wheel chair for her for as long as she needed it, for $10. All they asked is that when we were finished with it that we would return it.”
Allee got a lot of use out of that wheel chair because she could not walk for long distances. Unfortunately an immediate reprieve from the pain was not possible even at Scottish Rite, but they pursued treatment that did in fact help Allee.
The Doctors placed Allee on Methotrexate, a chemo therapy drug. Amazingly the Methotrexate was not strong enough to control the disease, so Allee was placed on Enbrel, a biological drug, in conjunction with the Methotrexate.
“I took Enbrel which was an injection and that…helped,” said Allee. “It made me a little bit better but I still couldn’t do things like a normal kid. I couldn’t run and play. It wasn’t just in my hands anymore it was in my knees and in my back, in my wrists. Pretty much everywhere.”
This new drug at the time was the best treatment for Allee. Though as time went on Allee developed a new symptom. She began to have stabbing pains in one of her legs. This turned out to be Restless Leg Syndrome, or RLS. The Enbrel Allee was taking had given her a nervous system disorder. Allee still suffers from RLS.
Allee then went on Gavipenten to treat this new disease, and was switched to an incredibly painful biological drug called Humira when she was 9-years old.
Humira is powerful and painful, but, in Alee’s case, it was also extremely effective.
After five years on Humira, doctors discovered that the bone the arthritis had eaten away in Allee’s right wrist, had actually grown back!
Doctors credited the medication.
The Meier family praised God.
Allee improved so much that she was able to stop taking Humira three years ago. She is now strictly on oral Methirexate to treat her healing body. She started this new treatment four months ago.
Though she still suffers from the remnants of the arthritis and will always have pain, Allee is hopeful for the future.
Already she has had a successful career as a small business owner, making jewelry.
She has played volleyball with the YMCA for three years and even took dance lessons for a time.
Allee aspires to be an Art Therapist. She has never desired people to pity her.
She does want to help people understand her rare illness and to help others see how God can work when we trust in Him.