Has eating out at a restaurant or going to a friend’s house become a stressful event? Imagine needing to know where the closest bathroom is at all times. Imagine an uncontrollable urge causing a humiliating accident. One of the many symptoms of congenital sucrase-isomaltase deficiency (CSID) is a severe and urgent need to have a… READ MORE
Thursday, September 20th, 2018, My Story
A patient’s story about attending college with a rare disease, CSID. Here are the lessons she learned living with sucrose intolerance at college.
My son Jarrod is in first grade and has sucrose intolerance. I was devastated when I heard about what happened at school yesterday. Upset and withdrawn after school, he finally told me at bedtime that he had diarrhea during recess and had to change clothes in the nurse’s office. The other kids were teasing him,… READ MORE
If dealing with sucrose intolerance is completely new, you may not know how to politely breach the topic with the party hostess. Here are some ideas for navigating birthday parties, while still maintaining your child’s dietary restrictions.
Siblings of a child diagnosed with Genetic Sucrase-Isomaltase Deficiency (GSID) may experience negative emotions. Here are some of the emotions that may arise and suggestions for ways that parents might tackle them.
By: Emma Brown Two months ago I threw my bathroom scale out the window. Granted, I live in a one-story house and it landed safely in a shrub, but I still felt a bit better. Unfortunately, my husband wanted to weigh himself after his shower. As I trudged around the back of the house to… READ MORE
Author: Laura J. Halloween was tricky to manage last year for my daughter, Gabrielle, who has sucrose intolerance. I let her go trick-or-treating with her friends, but like all 9-year-olds, they were only interested in collecting as much candy as they could. Her friends ate so much candy! Not wanting to feel left out, Gabrielle… READ MORE
By: Maggie Cooper I think that my barista is making me sick. I’m not talking about the holes in his earlobes that are big enough to throw a baseball through, or the fact that he really should put a hair net over his bushy beard. I’m talking about the latte that he has been making… READ MORE
By: Kate Coleman Ever since I can remember, I have loved elephants. My most beloved toy as a child was a stuffed elephant, and my favorite book was “The Story of Babar.” As an adult I have watched every documentary ever made about elephants, and I have read and reread “The Eye of the Elephant”… READ MORE
As an adult with sucrose intolerance, there are many factors to consider. Life is not as carefree as it once was. For someone who does not have sucrose intolerance, here are things that someone with this disorder has to think about and handle frequently. Planning is a huge part of my life. I have to… READ MORE