Meeting 17-year-old Jordan Camp, one would never suspect the many chronic health issues she faces. However, this straight-A Jourdanton High School senior has seen many different specialists as she and her family searched for an answer to her chronic pain.
“I did cheerleading and it would hurt, but I would push through it. Then the summer before I started my freshman year, I got a lump behind my collar bone, and I couldn’t move my arm. We went in to see what it was, and it ended up being a sack of fluid,” said Jordan.
When the pain grew worse, she saw more doctors.
“After about a year…we started getting diagnoses, but it was the summer before freshman year that things got really bad,” said Jordan.
Her mother, Chandra Camp, attributed it to growing pains and Jordan’s dedication to competitive cheerleading.
“We didn’t think much about it until that holiday incident. Then it was, okay, what’s going on with you?” said Chandra.
Once an avid athlete, the many restrictions Jordan faced took her out of athletics. Her mother described her daughter as going from being extremely active, to not being able to do much of anything.
“She did try to go back to competitive cheer a couple of times, and it was just too much. Thankfully, she’s been able to stay with the school cheer and she’s co-captain this year, so we’re excited for that,” said Chandra.
Along with the pain, Jordan would suffer from fatigue, swelling and inflammation.
After about a year of waiting to visit her rheumatologist in Austin, marker tests revealed a diagnosis: fibromyalgia. According to the Mayo Clinic, fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Mother and daughter explained that Jordan has the genetic marker, HBLA 27, which makes her more likely to have certain health conditions and autoimmune diseases. Healthline, a health information website, describes an autoimmune disease as a condition in which your immune system releases autoantibodies that mistakenly attack your healthy cells instead of targeting bacteria and viruses.
Along with fibromyalgia, Jordan also suffers from three types of arthritis: Enthesitis-related arthritis, ankylosing spondylitis and juvenile idiopathic rheumatoid arthritis. She also has dysautonomia, a disorder of the nervous system.
“If there is anything I’d like people to know it is that when you have something like this, there are not a lot of pediatric rheumatologists out there.” said Chandra. “The one that she had, Dr. Carrasco, took six months to get into. We saw him for two years before he left…We like her new rheumatologist, Dr. Orrock, but it’s terribly difficult to find somebody. Our next choice was to go to Dallas.”
Jordan also sees other specialists – Dr. Monagas at the UT Health Science Center, Dr. Perez at UT, Dr. Michelson, a UT therapist to help with pain management skills and Dr. Singh for cardiology issues, also at UT.
After her first diagnosis in 2015, she has gotten a new diagnosis every year, going from one specialist to the next.
“That’s what we’ve learned. When you have one auto-immune disease, you tend to have a lot. I know there are a lot of people out there with arthritis. Arthritis itself is not so unusual, but…the one she has is very unusual for girls,” said Chandra.
Fibromyalgia is also not diagnosed in many children. Her mother added that there may be more people out there who have it, but they just don’t know that they do. Jordan’s health conditions also exacerbate situations that are not usually a big issue, such as the knee pain development girls sometimes experience.
Having a diagnosis brought Jordan much relief. With that relief came frustration, said Chandra, when her arthritis medication was not working. Jordan also developed an ulcer from the medication.
“It’s a relief because you know your child doesn’t have something that is terminal, but at the same time who wants their child to be in pain all the time, and you can’t fix it?” said Chandra.
Dealing with an autoimmune disorder is difficult and it can affect family dynamics as well. Sometimes, the whole Camp family wants to go to the lake or Six Flags, but Jordan can’t because of the heat and walking required.
“So then you feel bad if you go, but then you’re frustrated because she can’t. She handles it really well. She knows what she can and can’t do. She knows her boundaries,” said Chandra.
Jordan is currently receiving Remicade infusions. Previously, she was on methotrexate, Humira and Orencia.
“I did self-injections and then pills and now I’m going to an infusion center in San Antonio. We were going to Austin, to a kid’s center up there, but the drive is too much,” Jordan said.
The morning of the interview, Jordan had an infusion, which she said was better than the ones before. In Austin, her infusions took four hours. The ones in San Antonio require about three.
“Now she’s just on the Remicade infusion and she takes some tummy medicine and some over the counter things. At one point, she was on like 10 medicines,” said Chandra.
Help from a service dog
“When I first got diagnosed, it was not even a thought in my mind because I was a freshman and didn’t know anything about it. As I got more diagnoses, I started to think about all of the different options of how I would get better. When the medications just weren’t working, I started to look into service dogs,” said Jordan.
Jordan started researching and found places that give service dogs for arthritis and fibromyalgia patients. Along with some medications not working, some had side effects she didn’t want to put her body through.
“A service dog is a way of treatment that’s not invasive. So through the service dog I can go out and do things. I can go to Six Flags. I can go to college and not be scared of what my body is going to do in class, so that’s kind of where it came up. After three or four medications, you start to think these resorts are coming down to the final options and after that I have to think of ways that are outside of the medical field that I can possibly get better through,” said Jordan.
She recently had enough money to get the service dog through a breeder in Dallas. In early August, she picked up a 6-week-old golden retriever. When the dog is 8-weeks-old, he will go into training.
“It’s going to be expensive and thankfully enough, the company is going to let her pay as you go. The goal is to get her and Samson (the dog) ready for college when she starts next August,” said Chandra.
“Two years is the point when service dogs are considered complete. You are always training, no matter how old they are, but two years is the mark when you are pretty much in a safe zone with them,” said Jordan. “After six months, people start really bringing them in to public, doing a lot with them. After about a year, you are safe to bring them to college, take them out everywhere with you,” Jordan said.
Samson will help Jordan with psychiatric and mobility issues, as her fibromyalgia can cause anxiety and a feeling of disconnect, panic attacks and “fibro fog.” Her dysautonomia causes dizziness, elevated heart rate and blood pooling in her legs.
Her service dog can provide Jordan with Deep Pressure Therapy where he uses his body weight to calm the body.
Jordan learned through her doctors that as the service dog lays on you its heart rate increases at the same rate as the patient. Then, the dog’s heart rate will decrease as the patient’s heart rate falls. Samson will also help with pull momentum, making walking less strenuous for Jordan.
After high school, she plans on attending Texas A&M University in San Antonio. At first, Jordan wanted to study veterinary science. However, because of her struggles, she plans on studying canine training to train dogs for other people.
The Camp family thanked the teachers and coaches at Jourdanton ISD for being understanding and supportive. They have worked with Jordan, especially when she has had to miss school for procedures and surgeries.
What would Jordan like people to know the most about chronic illness and autoimmune diseases?
“One of the hardest things for me, that I had to get past, was that because people can’t see it, they tend to not believe you. They tend to think that even a service dog is really a dumb thing for me to want to go through, because they can’t see all the things that are going on with my body, which is quite a lot.
She wants people to realize they should stop and not judge people based on what they see.
“There are a lot of chronic illnesses and invisible disabilities that affect so many people. They (people with chronic illnesses and invisible disabilities) are so afraid to come out and advocate for them, because of the bullies out there and all the people that will tell you that you are wrong.”
Many times, Chandra said, it isn’t necessarily that people want to be mean. It is often that they do not understand.
“I’ll tell you this one (Jordan) has researched. She knows everything about her diseases. She knows the ins and outs. She is an advocate for herself,” Chandra said.
To advocate for people with chronic illness, Jordan created an Instagram page, Jordan’s Chronicles, where followers can find a community of people who all live life with a chronic illness.
The Camp family is planning an upcoming bake sale fundraiser to offset service dog expenses. In the meantime, a Go Fund Me account has been set up to support Jordan and her service dog, Samson.
Here is the link: www.gofundme.com/f/3hqr8-service-do g?sharetype=teams&m ember=2300110&utm_ medium=copy_ link&utm_ source=customer&utm_ campaign=p_ na+share-she et&rcid=439272bd5b5d4ee a9c32761caea9aac0