Darren Radke's Experience Living With Lupus and Antiphospholipid Syndrome

The Spoonie Struggle

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3y ago 52:20

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Episode 40: Darren Radke's Experience Living With Lupus and Antiphospholipid Syndrome

In this episode, guest Darren Radke shares his experience living with Lupus and Antiphospholipid Syndrome. He also was diagnosed as a having a hippocampal cyst in his brain, an issue with a heart valve, and a lung issue. His symptoms initially came on really fast, but doctors couldn’t figure out what was going on. He was eventually found to have 2 blood clots. He was immediately placed on blood thinners. He was diagnosed at that time with Lupus, but there was no mention of APS. Years later, he had 3 seizures. He was treated for epilepsy. Years later, a doctor had an inkling that he had APS, and within 5 months, he was diagnosed with APS. Challenges include fatigue, joint pain, cognitive decline, emotional changes, loss of his job, and trouble with finances. He detailed some negative experiences with his first neurologist. He often didn’t feel heard by his doctors. Treatments included staying active, eating a high protein diet, listening to music. His condition has affected his cognitive abilities, he cannot balance a checkbook, he limits his driving, he gets dizzy frequently so he has to limit going out, has lost interpersonal skills, and not feeling useful to others. He discussed his experience with social isolation.

Links:

Deceived From Within: Living With APS and Lupus

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