Doctors Ignored Alia’s Mystery Illness Until It Was Almost Too Late

In the lifespan of this podcast we have never heard a story quite like Alia’s. Up until she was 27, she was living a healthy, active life. She was a vegetarian since the age of 15, and an avid gym-goer who continued to hit personal bests on lifts. Using her degree in philosophy with an emphasis in biomedical ethics, she works as a Research Data Coordinator for Oncology Research in Iowa. But at 27 her life was flipped upside down when a mysterious seizure kicked off a years-long, life-altering struggle. From the beginning of this medical odyssey, Alia has received shockingly dismissive treatment from doctors. They claimed her seizures were caused by stress, insisting the only treatment she needed was therapy. When she was diagnosed with intracranial hypertension around the time her seizures started, her doctor said it was just anxiety and she should take a bath. Alia applied her experience as a medical researcher to her own case, noticing that there was a link between her seizures and a drop in blood sugar, but doctors refused to examine this link. In fact, they accused her of injecting herself with insulin because her blood sugar was repeatedly dropping so low. Soon she was having gastrointestinal issues, getting extremely bloated when eating, accompanied by sharp, stabbing pains that felt like “glass shards, nails, and acid in your stomach." She would literally pass out from the pain of trying to eat. She was slowly forced to eat less and less, switching to smoothies, and then Ensure to try to keep nutrients in her body. She quickly lost 65 pounds, but doctors refused to do anything about it because her BMI was still within normal range. Instead of helping her get the feeding tube she would need to survive, doctors accused her of starving herself for attention. In this episode of the Major Pain podcast, Alia talks us through the impossible choices she has been forced to make over and over again on this incredibly difficult journey. At multiple points she has almost entered hospice care when the struggle seemed like it would be fruitless. Thankfully, through the Undiagnosed Disease Network and a few exceptional doctors across the country who took her seriously, Alia continues to persevere. She hopes that by sharing her story, she can help others with similar undiagnosed conditions avoid some of the struggles she has faced. Learn more about Alia's journey on her blog: https://waitwiah.blogspot.com/ PlayWatch the episode on YouTube or Spotify, or listen on your favorite podcast platform.