When we talk about arthritis, we always associate it with getting old. We think of it as something our grandparents complain about.
Many of us didn’t know that teenagers or even kids can also have arthritis, one form of which is juvenile psoriatic arthritis (JPsA).
What is juvenile PsA?
Juvenile psoriatic arthritis is a chronic disease that involves swelling and inflammation of the joints among kids and teens who also have psoriasis, a condition that causes red scaly patches of skin and discoloration of the nails.
Other symptoms of psoriatic arthritis include:
- achy joints
- stiffness, especially in the morning
Although each person’s case may be different from another, most of the symptoms experienced by kids and teens are usually the same as adults’. It’s also very important to note that PsA patients, regardless of age, are at a greater risk of having uveitis. Uveitis is an eye inflammation that can cause loss of eyesight if not treated immediately.
It is unclear what exactly causes JPsA although many patients have a relative who is also affected either by psoriasis or psoriatic arthritis.
At present, there is no cure for PsA but remission is possible. Rheumatologists would typically prescribe a series of medications–including analgesics, non-steroidal anti-inflammatory drugs (NSAIDS), disease-modifying antirheumatic drugs (DMARDs), and biologics–until the patient finds one that works. And since biologics are very expensive, insurance companies require patients to try other medications first before covering biologics, usually through a co-pay arrangement.
Challenges of dealing with JPsA
There is no denying that dealing with psoriatic arthritis, in general, can be really challenging. But there are specific impacts in the lives of young patients that are worth taking note of.
1. Having to miss certain activities
When exactly a patient will have a flare can be difficult to predict. Some days they just wake up in extreme pain or fatigue and would need to stay at home. They would have to cancel on activities that were planned for that day. Missing out on a lot of events, especially when all your friends are there, can have a big emotional effect.
2. Needing accommodations at school
Attending school while dealing with a chronic illness is so much different. Students with psoriatic arthritis need accommodations at school so that they can maximize their student life.
Some of the things they need include being able to stay at the school clinic when needed and using audio recording devices to record the lectures that they have to miss. It is very important to make the school personnel understand the nature of psoriatic arthritis as soon as possible so that they can be more supportive.
3. Dealing with a lot of questions and comments
Since people have associated arthritis with old age, there is a tendency for them to ask the patient a lot of questions, give unsolicited advice, or worse, say hurtful comments. For instance, they could ask why they have to deal with arthritis at a very young age or advise them to try a certain diet or exercise even if they have no idea what psoriatic arthritis is. These can cause stress to the patient even if the person meant well.
Learning about JPsA
One of the best ways to help patients, especially for the family and relatives, is to learn as much as they can about Juvenile Psoriatic Arthritis. This includes joining patient communities like Ben’s Friends’ Living with Psoriatic Arthritis.
Here, they can get in touch with people living with psoriatic arthritis, including young patients and even older patients who had PsA since childhood, which will allow them to have a better knowledge of what their loved one is going through. This is especially helpful if they can’t fully explain what they feel and experience.
Through the Living with Psoriatic Arthritis community, they can also learn different ways on how they can better care and advocate for their loved one.
If you live in the US, you can also check out the programs of the Arthritis Foundation for juvenile arthritis patients. They have local groups that organize activities like camping where the kids can interact with other juvenile arthritis patients.
Although many people think of arthritis as a condition that only elderly people have, kids and teens can also suffer from it, including psoriatic arthritis. It can have a big impact on the lives of young patients such as having to cancel planned activities, requesting accommodations at school and dealing with the emotional effects of having a chronic illness at a young age.
One way to help patients is to learn more about the disease as well as how patients deal with it in their daily lives. This will allow more people to better empathize with them, refrain from saying things that would only make patients feel worse, and provide support when needed.
If you or anyone you know are affected by Juvenile Psoriatic Arthritis, we invite you to sign up to our Living with Psoriatic Arthritis community so that you can have a safe and supportive online community.