Story about Congenital Sucrase Isomaltase Deficiency , CRPS Complex Regional Pain Syndrome, Dysautonomia / POTS.

My Story

Jan 14, 2018

By: Sophie

Year Condition Began: 2017


In 2017, on 26th of May, I have diagnosed with Congenital Sucrase-Isomaltase deficiency a condition that I had never heard and my mum hadn't either who has a Master in Dietician. But I slowly learnt that this condition was very rare and was going be a challenge to live with. The more I read the more it made sense that this what I had been living with for my whole life. I have been in and out of doctors appointment compleating about stomach pain but was just told I had the stomach bug, the biggest symptom I had was low blood sugars, I would spend day suck in bed because when I got up I felt dizzy and my hand were shaking. I was a very active kid and towards the last 2 and half years before I was diagnosed, this impact that great because I had no energy even though I was been pack with sugar. I also stuff from complex regional pain syndrome which meant I was taking a lot of Nurofen which is coated in sugar, so after a big case of the stomach bug that left me in the ER, I just got sick all the symptom became more dominant and after trying excluded every food intolerance which show that I was lactose intolerance but after a few month I start to got stomach pain again and was referred to a Gastroenterology and had a bipoles of the small intestine which show I had Congenital Sucrase-Isomaltase deficiency.

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