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While AK’s peers were shopping for prom dresses and applying to college, she spent senior year self-advocating and undergoing hospitalizations. AK had been diagnosed with juvenile arthritis at 12 years old after experiencing jaw and ankle pain. Subsequently, the flares became increasingly systemic with daily spiking fevers. AK shares how difficult it was for her to communicate to doctors what she was feeling at a young age. As she learned more about her condition, she eventually received the diagnosis of systemic juvenile idiopathic arthritis (SJA), also known as Still’s disease, which causes high spiking fevers, organ inflammation, joint pain, and rashes.

<figure class="wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio">
<figcaption class="wp-element-caption">In this clip, AK describes juvenile idiopathic arthritis, AKA Still’s disease.</figcaption></figure>

AK details her diagnosis journey and how her symptoms worsened during high school. She shares her experience with infusions, using a wheelchair due to joint contractures, and surgeries to remove bone fragments. Ultimately, her jaw pain became so severe that she couldn’t open her mouth to eat, which led to malnutrition. Further, she was having daily fevers around the same time each day and could hardly get out of bed. As AK grew older, she realized that her doctors were looking at what was on the surface, rather than looking deeper into imaging and why she was experiencing painful symptoms. Through her persistence, she advocated for doctors to find the correct diagnosis and changes in her symptom management. 

In this episode of the Major Pain podcast, AK emphasizes the joy and appreciation she has found through her diagnosis. Just two years ago, AK was at her lowest point in life. However, after studying her condition and advocating for an accurate diagnosis and treatment avenues, she sees how fulfilling life can be. Now, she is living her dream by studying film production and pursuing adaptive skiing. Though there are moments she cannot relive and will undergo joint replacements in the future, AK continues to find beauty in the present.

Donate to AK’s GoFundMe to help her purchase a sit-ski rig! https://www.gofundme.com/f/help-alexa-ski-again?member=32197051&sharetype=teams

Check out this interview with our host Jesse on the Grants for Creators Substack! https://www.grantsforcreators.com/p/jesse-mercury?publication_id=708860&post_id=146641097&isFreemail=false&r=1q16dp&triedRedirect=true

Podcast description by Kait Williams @alignedk8

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