A Hard Battle Against Achalasia

By Sonia, Achalasia cardia, United States, February 22, 2021

aSoni

Diagnosed at age 14 with achalasia, a Rare Disease, changed my life forever. 1 in about 100,000 people are diagnosed with Achalasia worldwide annually. My symptoms were choking on food and liquids (dysphagia), not being able to retain food and liquids, severe chest pain, losing weight, and pneumonia.

My achalasia was so severe that even a Heller’s Myotomy was unsuccessful and my doctors said it was one of the worst cases they had seen on the US East Coast in 1997. Through an esophageal manometry study it was evident that my entire esophagus had stopped working.  I spent a lot of time in and out of Children’s Hospital of Philadelphia where Dr. Louise Schnaufer performed a ground breaking surgery that led me to a more comfortable life.

I have my good days and bad days, but do not let it bring me down and have had many complexities from my Achalasia. Battling achalasia, inspired me to give back, and pursue clinical research (Clinical Operations) as a Career. I will always be indebted to Dr. Schnaufer who never gave up on me and made me the woman I am today. #Rareandstrong

 

*Find others with Achalasia on RareConnect, the online platform for people affected by rare diseases

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