Over the last several months, I have received some messages and questions about Juvenile Rheumatoid Arthritis. Chemistry Cachet has many articles about rheumatoid arthritis, but I have never written anything about JRA except that I had it as a child.

Today, I would love to share with you an article about living with Juvenile Rheumatoid Arthritis. Perhaps you know someone dealing with it or maybe even your own child is going through it.

I think the hardest thing about Juvenile Arthritis is feeling alone and facing the unknown. I know for me, that was the scariest thing when I was diagnosed at 10.

I had no idea what I was facing, and I didn’t know anyone my age who had a disease. It was a confusing time.

There are some things I learned along the way. Things my 10-year-old self could have really benefited from. I hope this can help other children going through this as well as parents.

Let’s start with the diagnosis.

Juvenile Rheumatoid Arthritis Diagnosis

In the fall of 1997, 5^th grade for me, I woke up one morning feeling a little strange. All 10 of my fingers were stiff and painful. I remember trying to make a fist, and it was almost impossible.

The first thing that ran through my mind was panic! What in the world was going on? I got up, got dressed as usual, then went to school. I was a little scared to tell anyone because I thought maybe I had an injury or something. I didn’t want to miss out on activities or basketball (picture of me below the same season I was diagnosed), so I kept thinking it might go away in a few days.

By the end of the day, I knew something wasn’t right. My fingers just ached and were so swollen. When my mom picked me up from school, I told her what was going on.

She was baffled and asked if maybe I jammed my fingers in basketball? We thought that must be it! She said we would keep an eye out on it.

My poor fingers didn’t get better after a few days, so we made an appointment to see the doctor. He said there were a few possibilities, but he would run a blood test to see.

Two days later, we got the call that I tested positive for Juvenile Rheumatoid Arthritis. He referred me to a children’s rheumatologist in Fort Worth at the Children’s Hospital.

I was so incredibly scared. I had no idea what any of this meant. All I knew was my poor fingers hurt so much, and I was just really tired.

The First Visit to the Rheumatologist

My dad and I headed out at the crack of dawn to go see my new rheumatologist for the first time. I remember this doctor so well. He had been in rheumatology for DECADES. He was very old, but very smart and knowledgeable in this field. He checked every square inch of my body. I remember he wrote down on the paper they pull out on the beds you sit on all the percentages and decimals of inflammation in every joint. You can ask my dad to this day about this doctor! He knew his stuff!

He found arthritis in some other joints and started me on an anti-inflammatory right away. He referred me to his partner because he was retiring in just a few months. His partner worked at the Scottish Rite Hospital in Dallas, so that is where I would be going from now on.

The Sottish Rite Hospital

We lived about 3 hours from Dallas, so it was an all-day event going there. I remember leaving our house at 5:00am to go to our first appointment there.

I was so nervous and scared about going. I had no idea what they were going to do or say.  This was going to be my first real visit for care and treatment.

When we first walked into the hospital, everyone was so kind and friendly. We got checked in, and they had me do a urine sample. This was the most humiliating thing I had to do at this point. Of course, looking back now, this is nothing! But to a child, it is so embarrassing to pee in a cup!

I did it, and my dad made sure to cover it up while we walked it back down to the desk. I was so scared for anyone to see it! Kids are worried about these things…

Then, it was time for blood work again. They took a lot of blood work too! I remember this lady so well. She was always there when I had to get my blood taken. She was the sweetest, kindest woman. She did such a great job taking my blood, it never hurt. Then, she would let me pick out stickers and a teddy bear. It made me feel so special! To this day, I will always remember her kind and gentle spirit.

The hardest thing about the Scottish Rite Hospital was the wait time. It wasn’t unusual for us to wait 3 or 4 hours to see the doctor. To a child, that is like an eternity! My dad made it fun though. We would play cards and have snacks while we waited.

I felt scared and out of place, but seeing the other children at this hospital made me realize I didn’t have anything to complain about. Some children there were dealing with cancer, missing limbs, being in wheelchairs, I was so blessed to only have something so minor going on.

When it was finally time to see my doctor for the first time, I was so petrified. The Scottish Rite also has many student doctors training, so she brought in a few other students to look at my joints.

Official Diagnosis

She officially diagnosed me with Polyarticular Juvenile Rheumatoid Arthritis. This is the type that can move around from major joint to major joint.

They sent me home with a letter to give to all of my teachers and coaches.

The letter explained to my teachers that I had a disability that might effective my ability to do things. There may be times when I seem distant and quiet or really tired, but this was all part of my disease.

To me, this was almost as hard as going to the doctor. Having to give this letter to all my teachers! It was just embarrassing; I didn’t want to be different!

I gave it to them anyways, they were all very kind.

My 6^th grade science teacher was so sweet about it! He pulled me aside when we headed to the computer lab and told me if things got too hard or I wasn’t up to typing, he would let me do something else.

Overall, everyone was understanding. My peers didn’t understand it though.

To them, arthritis was an “old persons” disease! There were also some adults who didn’t believe me when I said I had rheumatoid arthritis; they just didn’t believe it was possible for a young child to have it!

The years passed, and I continued to go to the Scottish Rite every three to four months for care.

When I was in junior high, I started getting RA in my left knee really bad. This is what hindered me from doing sports like I used to. I continued to participate in athletics, but I just couldn’t do things like the other kids, like running.

The world we live in today is much different than it was 20 years ago, but I did encounter some unfair treatment in athletics. The coaches wouldn’t let me play on the team with a disability. This was a small-town Texas school very into sports! Instead, they made me the manager of the volleyball team, so I was still able to participate.

High school was really rough. I finally quit athletics and tried some other things. My knee was really bad through high school, and I had to get injections in it plus get it drained. That was very painful and difficult.

Remission??

What kept me going was knowing most children outgrow JRA by 18. Sure enough, I went into remission when I was 17 years old. All my symptoms completely went away!

I felt like the nightmare was over and things would be okay!

It didn’t last long though. My first semester in college, my knee started acting up and it got so swollen. I went back to a rheumatologist, and sure enough, the RA was back. This time it was adult arthritis.

So, this leads me to a few things I think parents and children need to know about juvenile arthritis. Things I wish I had known!

Things You Need to Know about Juvenile Rheumatoid Arthritis Patients

Although many juvenile arthritis patients outgrow it, there is a possibility you might not. That’s okay though! You can still live a full, healthy, active, and long life even if it continues into adulthood.

Listen to your doctors! There are so many things out there in today’s world about medicines, healthcare, and doctors, but they are knowledgeable in this field. If they prescribe a medicine for your child, it is to help their symptoms. The most important thing about juvenile arthritis is to prevent joint damage. By taking the right medications, you can prevent any lasting damage. Don’t let people scare you about the dangers of medicines or treatments, these are meant to protect your body.

You did NOTHING to cause this disease! Your child did nothing to cause this disease! There is nothing you could have done to prevent this disease, so don’t let that thought come into your mind. Rheumatoid arthritis is a genetic disease. This is true with all childhood illnesses, don’t blame yourself.

Don’t listen to all the “experts” out there. If you are new to this situation or you have been doing this for a while, then you know about all these people who start telling you what to try, what to do, and what you are doing wrong. Don’t listen to anyone! Listen to your doctor and your child. I can’t tell you how many experts have told me what I should be doing, how I should cure my arthritis, etc, etc. What happens with this, is you start doubting yourself. Maybe you start trying other things for your child. This is a dangerous thing to do when dealing with pediatric care. It is different when you are an adult, but a child needs to follow a doctor’s care and treatment, no one else.

There are going to be days when your child just doesn’t feel good. That’s okay! Juvenile Rheumatoid Arthritis can make you tired and cranky, but it just come with the disease. Be understanding of your child when they are going through this. They might just need a day of rest or a weekend on the couch with movies. There were some days I just felt like crap. My mom would make me up a bed on the couch, fix me some great snacks, and we would just hang out watching movies. Sometimes, you just need this.

My next tip is perhaps the most important one of all. Your child CAN have a completely normal and full life. Do not listen to anyone who says otherwise.  I was told all types of scary things like I would never have children, would suffer from bad health all my life, and would probably die young. Well, that is a horrible thing to think about as a parent or child! I am a healthy, happy 32-year-old with a healthy 16-month-old daughter. I had a great pregnancy and was able to get pregnant without many issues despite being on medications during childhood and early adulthood.

So, don’t listen to that. Your child is doing great and will live a normal, healthy life.

Something that your child will develop with a JRA diagnosis, is an understanding and caring heart. They will see things in a different perspective, making them very kind and caring children and adults. They will learn how to overcome obstacles and work hard for things. This will make them appreciate and enjoy the things in life.

I think this is true with any childhood illness.

When they become adults, minor problems won’t bother them as much. Or maybe years down the road, they will be able to help someone more like I was able to help my husband when he became ill.

Most importantly, you are not alone. Your child is not alone. There are many kids going through this, and I was one of them. I spent many days thinking I was so alone and felt out of place with most things I did, but now I know I wasn’t alone at all.

My faith in Jesus was strengthened at a young age because I learned to pray and depend on the Lord to help me through things because I physically couldn’t sometimes. This has actually be the greatest blessing of all.

If you are the parent of a child with JRA or know someone who is, just know everything will be okay. In fact, everything will be good! It won’t be easy, and sometimes it will be painful, but you will be stronger through it!

I am always available to help and answer questions, feel free to email ?

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