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My Journey From JIA to Pulmonary Hypertension

Editor's Note: This article was written by Emily Wahl and was originally published on our new Health Union community, To check out the new community, click the blue button below!

I would have never thought a Halloween night in the 90s would have shaped my life today.

I was your typical 4-year-old, running around trick-or-treating, when I ended up falling and hurting my knee. This quickly turned out to be more than a skinned knee.

After a few specialist visits, I was diagnosed with juvenile rheumatoid arthritis (JRA), which is now more commonly known as juvenile idiopathic arthritis (JIA).

I just wanted to be a kid

My knee would flare off and on for several years well into my late teens. It would be swollen and stiff, limiting my full mobility in the most active years of my life. Not only did I face JIA, but I spent many hours after school waiting in the ophthalmologist's office being treated for uveitis.

My poor parents had to force me to take medication and use eye drops religiously. I just wanted to be a kid and have nothing to do with the nasty medicine or the painful injections.

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I spent a lot of time around medicine as a child

The countless hours in doctors’ offices and the numerous medications left me so curious. I always wanted to know the why. Why do I have to take this medicine? How do I have inflammation in my eyes and not feel it?

My visits were so routine, I already knew what testing came next and could tell the provider how to perform it. I knew I would have to talk to 4 different doctors before I finally was able to see my rheumatologist. Spending this much time around medicine at a young age started to have an impact on me and shaped my future.

Using my limitations as motivation

Despite the joint limitations, I was still running and playing like any other kid. I played soccer my entire youth and ran cross country in high school. I sat out if I needed to, but I used my limitations as motivation.

I continued to carry that mindset through each transition and trial I encountered. I found myself at a college fair with my parents, trying to figure out what I wanted to major in. When I came across physical therapy, my mind was immediately set, and you couldn’t convince me otherwise.

I knew I wanted to do something in the medical field because of my own personal experience with joint limitations. I also appreciated the competitiveness of sports and thought I wanted to work with athletes. Physical therapy seemed to combine my 2 interests perfectly.

A diagnosis of Sjögren’s syndrome

As I navigated college, my joint pain started to become less and less frequent. Everyone on my medical team assumed I had grown out of the JIA. However, it was just morphing into the next autoimmune disease — Sjögren’s syndrome.

I had the classic dry mouth and dry eye symptoms, as well as swollen salivary glands. That was pretty uncomfortable, but I could still go about my day with minimal disruption. I just always carried gum and extra water with me.

I knew this as my "adult" autoimmune disease. I could live with these symptoms; it was just dry eyes, right?

Autoimmune disease and inflammation were wreaking havoc

Boy, was I wrong! Sjögren’s syndrome is a type of connective tissue disease, so it has the capacity to affect multiple organ systems. My body allowed it to do just that.1

My autoimmune disease manifested as JIA affecting just one joint, but as I grew and matured, it became less about the joints, and more systemic inflammation was wreaking havoc under the surface.

Living with constant variations of autoimmune symptoms my whole life started to become very confusing for me. Whenever I brought up new symptoms, my autoimmune disease was used as the scapegoat. It was never investigated further, and I was usually treated with a course of steroids.

My diagnoses have inspired me to be a better physical therapist

Now, I currently live with pulmonary arterial hypertension (PAH), Sjögren’s syndrome, lupus, and a kidney disease known as focal segmental glomerulosclerosis (FSGS). I would have never thought that my JIA would turn into such rare and complex diseases.

The JIA inspired me to seek a career in physical therapy, and the complexities inspired me to focus on treating those with autoimmune disease. Having the lived experience has made me a more compassionate and understanding therapist.

You can never have too many people on your side

I enjoy teaching people how to highlight their abilities rather than focus solely on limitations. I aim to teach people how to feel comfortable with movement and exercise, which can sound like the worst nightmare of someone with joint pain. I want my patients to push boundaries and succeed, but I also understand if you feel sick during our appointment because of your methotrexate injection the day before.

I appreciate the opportunity to advocate for my patients as a healthcare provider. Being chronically ill is hard enough on its own. You can never have too many people on your side in the healthcare world.

My journey from JIA to PAH was unpredictable, but I hold on dearly to the opportunities it has provided me.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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