Elise, a resilient individual from London, faces daily challenges due to a rare swallowing condition known as achalasia. This condition, which affects the esophagus, has drastically changed her life since it unexpectedly struck in January 2020. Despite seeking medical attention promptly, Elise endured a lengthy journey to diagnosis, finally receiving confirmation of her condition in November 2024.
Initially, Elise experienced a tight pressure in her chest and struggled with swallowing food or even burping. Her persistent symptoms led her to seek specialist care in January 2021. However, she felt "let down" by a lack of effective communication and support, prolonging her path to an accurate diagnosis.
Achalasia has made it "nearly impossible" for Elise to eat or drink normally. She endures the distressing experience of regurgitating food or vomiting up to 60 times a day. Her diet is severely restricted, primarily consisting of cereal soaked in milk and chips, leading to a significant drop in her weight to just seven stone.
The condition has debilitating side effects, including esophageal spasms that cause pain in her jaw, neck, and back. Elise describes her throat as “basically broken,” highlighting the immense discomfort she faces regularly. On particularly challenging days, she has been sick as many as 63 times and often wakes up at night, only for the water she drinks to come back up.
“There is no activity in my throat – it’s basically broken.”
In her quest for relief, Elise has conducted extensive research and believes that a procedure known as peroral endoscopic myotomy (POEM) offers her the best chance to eat "normally" again. However, she remains in limbo, waiting for her specialist to refer her for this potentially life-changing procedure.
“I have to wait for my specialist to refer me for the procedure.”
Elise's ordeal underscores the challenges faced by those with rare medical conditions. Despite not being life-threatening, achalasia presents significant hurdles that affect daily life and well-being.
“It’s not a death sentence, but it’s no way to live.”
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