Welcome back to Musings of an Arthritic Artist!
It's July, which means it is Juvenile Arthritis Awareness Month! In this post, I'm going to be giving insight about my condition. I talked briefly about it in my first post (linked here: What No One Tells You About Arthritis: Introducing Me (opens in new window)), along with many posts since, but I've decided to go into more detail. I've also decided to include some resources at the end of this post for further information.
Disclaimer: I am not a doctor, therefore this post doesn't substitute actual medical sites or advice. This is purely for educational purposes.
With that aside, let's get into the post!
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| King, Alexandria. Musings of an Arthritic Artist. 2021. |
As I mentioned in my first post, juvenile arthritis (JA) is arthritis that occurs between the ages of 0 and 16. In my case, I was diagnosed at 9 months old.
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There may be some questions you're wondering about regarding this post. What is JA? What are the symptoms of JA? Are all types of JA the same? How common is JA? What causes JA? Can it be cured/what are the treatment options?
I'm going to begin with the first question and answer them in chronological order.
Most types of JA are classified as autoimmune or autoinflammatory diseases. This means the immune system is hyperactive. The immune system is supposed to fight against invaders such as viruses and other bacteria (germs), but with an autoimmune disease, it can get confused and instead attack healthy cells and tissue. This leads to the next question.
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What are the symptoms of JA?
Each subtype (I'll go into those next) has their own specific symptoms, but the following symptoms overlap with most types of JA.
- Joint pain or stiffness
- Joints that are red, swollen, warm/hot, or tender
- Fatigue
These symptoms tend to occur after our bodies determine something as toxic and something that needs to be eliminated, even if it's a healthy cell or tissue. When this happens, we call it a flare.
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Now, let's answer the third question. Are all types of JA the same? In short, no.
Technically, juvenile arthritis isn't a specific disease. It's actually an umbrella term used to refer to different types. There are technically 6 types, however there are many subtypes within these. The diseases labeled as falling under the JA umbrella are as follows: juvenile idiopathic arthritis, juvenile myositis, juvenile lupus, juvenile scleroderma, vasculitis, and fibromyalgia.
Because of the lack of knowledge I have of the other five, I'm predominately going to be discussing juvenile idiopathic arthritis (JIA), which is the JA type I have.
Juvenile idiopathic arthritis is the most common form of juvenile arthritis. According to the Arthritis Foundation's website (exact link included at the bottom of this post), there are 6 subtypes of juvenile idiopathic arthritis.
Oligoarticular (which was called pauciarticular when I was a child) arthritis is the first, which affects four or fewer joints (it typically only affects large joints, such as the knees, elbows, ankles, etc.). Oligoarticular is the most common of the JIA subtypes.
Next, we have polyarticular arthritis, which affects five or more joints, regardless of if they're small or large. This is the second most common, affecting about 25% of the children with JIA. With this type, there's a higher risk of developing uveitis, a form of eye inflammation. Now, I know I said there are six subtypes under the juvenile idiopathic arthritis label, but polyarticular technically has two types.
There's polyarticular-RF (rheumatoid factor) positive and polyarticular-RF negative (which is the type I have). What's the difference?
There are many differences for these subtypes. RF positive polyarticular arthritis tends to work in a symmetrical pattern. When one knee hurts, the other does too. It tends to affect both sides of the body equally. If one wrist hurts, chances are both do with this type. It's also the type that tends to lead to more severe disease, highly resembling rheumatoid arthritis.
RF negative polyarticular arthritis is the exact opposite. This type tends to work in an asymmetric pattern. If one wrist hurts, it doesn't automatically mean the other one will. Polyarticular-RF negative arthritis affects roughly 20% of the children with JIA.
In RF negative arthritis, the Temperomandibular joint (jaw; particularly where the jawbone connects to the skull) and cervical spine (neck) can be areas that are affected (I have arthritis in both of these joints).
In my case, I have arthritis in every moveable joint, including the main five (wrists, elbows, shoulders, knees, and ankles), though it definitely isn't limited to these. I have arthritis in all of my fingers and toes, along with my back and hip. My body can sometimes be a walking disaster, but most days it behaves.
The next one is systemic juvenile idiopathic arthritis (SJIA), which affects about 10% of the children with JIA. This type affects the entire body, including the joints, skin, and internal organs (heart, lungs, etc.). Fevers and rashes are common for this type of juvenile arthritis.
Next is juvenile psoriatic arthritis (JPsA). This affects about 6% of the JIA population. It is characterized by long-term (chronic) joint inflammation and swelling, along with a higher risk of asymptomatic eye inflammation. It may affect one or more joints, most commonly knees, wrists, ankles, fingers, or toes. There can also be skin symptoms, seeing as this is a psoriatic condition.
Following this is enthesitis-related arthritis, also known as spondyloarthritis. This affects where muscles, ligaments, and tendons attach to bones (entheses). It'll more commonly affect the hips, knees, and feet, but can also affect the fingers, elbows, pelvis, digestive tract (Crohn's disease or ulcerative colitis), or the lower back (anklylosing spondylitis). This JIA subtype is more common in boys.
Lastly, we have undifferentiated juvenile idiopathic arthritis. This is where the outliers kind of fit. This is the type that has symptoms that don't perfectly match up with any of the subtypes listed above, but inflammation is present in one or more joints, which is why it's still considered juvenile idiopathic arthritis.
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The next question is, "How common is JA?"
This is a very easy question to answer.
Juvenile arthritis is the most common childhood autoimmune disease, however it's still relatively rare. Nearly 300,000 children and teens in the USA are affected by JA. It affects about 1 in 1,000 children.
This means I had a 1 in 1,000 chance of getting juvenile arthritis. That in turn means I had a 0.1% chance of being diagnosed with the condition. In case you didn't know already, I hit the jackpot.
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Now comes the next question. If you can't remember what that question was, I'll quickly refresh your memory. What causes JA?
There's no clear answer. In the specific type I have (JIA), the I is an abbreviation for idiopathic, which is defined as a disease that has an unknown cause. It is derived from the Greek 'idios,' meaning "one's own," and 'pathos,' meaning "suffering."
Certain genes may be more susceptible to developing JA (my maternal side of the family has a long line of arthritis and interconnected autoimmune conditions) when activated by a virus, bacteria, or other external factors, but the short answer is that doctors don't really know. It's a mysterious disease, like many are.
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Now, I'll answer the final question. Can JA be cured/what are the treatment options?
As for the first half of the question, the answer is no. Autoimmune diseases cannot be cured. They can only be managed. Some children and teens reach remission for good and don't have to deal with many (if any) symptoms, but in the majority of cases, remission takes years to obtain. I've had JIA for about eighteen years now and whenever I've achieved remission it never lasts long.
Autoimmune diseases fall under chronic illnesses. Chronic means "persisting for a long time or constantly reoccurring." In layman's terms, persistent, long-term, and incurable.
For the second question, there are many treatment options, most of them including medications, but can also include things like diet, exercise (though I can't do most standard exercises such as jumping jacks and push-ups because they put too much pressure on my joints; some of my favorite ways to exercise include dance and swimming), and keeping stress to as much of a minimum as much as humanely possible.
There are a few different medication options, which will be prescribed (obviously) on a case-by-case basis.
The first medicine classification is NSAIDs (non-steroidal anti-inflammatory drug). Medicines that count as NSAIDs can be both prescribed and over-the-counter. Medicines under the NSAID classification include naproxen, ibuprofen, and aspirin, though there are many more.
The next ones are DMARDs (disease-modifying anti-rheumatic drug). DMARDs are a more potent medicine classification than NSAIDs. Medicines that count as NSAIDs can be both prescribed and over-the-counter, while DMARDs can only be prescribed.
A couple examples of DMARDs (disease-modifying anti-rheumatic drug) are methotrexate, Enbrel and Humira (the last two you may have seen on a television commercial).
The most common medication used to treat juvenile arthritis is methotrexate. Methotrexate is a medicine that is used to treat cancer patients, but doctors and medical researchers found that in lower doses, it could be used to treat individuals with certain types of arthritis, including rheumatoid arthritis and juvenile idiopathic arthritis. It can also be used to treat severe psoriasis.
As far as doctor appointments go, the doctor children with JA typically go to is a pediatric rheumatologist. There are only about 300 of those in the USA. While this may seem like a fairly decent number, it's really not. There's a total of 7,000 rheumatologists in the US. That means that only about 4% of the total rheumatologists in the US are pediatric rheumatologists.
When you have almost 300,000 children and teens diagnosed with JA, the numbers for pediatric rheumatologists are very slim. To make sure every child with JA has medical care, each pediatric rheumatologist would have to treat 1,000 children.
Since there are very few, there are a lot of people who have to travel for medical care. There are a lot of people who live near hospitals where pediatric rheumatologists work, but I wasn't one of them. For about 15 years, my family and I had to travel about 600 miles to get medical care.
With the right lifestyle, children with JIA can achieve remission and live pretty normal lives, while others still struggle with debilitating symptoms as adults. Some children with JIA are disabled (both visibly and invisibly; I am classified disabled under the latter), but a lot of them aren't.
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