Hey Everyone! I hope you are all having a wonderful week so far. I wanted to write this post because I wanted to raise awareness for people with chronic illnesses. Just as a disclaimer though, I am not one to focus on my flaws often. I don’t like pity and/or being known as the “sick girl” so I don’t talk about it often although it does affect my daily life extensively.
So I guess we will start from the beginning. I was born with something called Glucose Galactose Malabsorption (GGM) which according to the National Organization of Rare Disorders is “an inherited metabolic disorder characterized by the small intestine’s inability to transport and absorb glucose and galactose ( simple sugars or monosaccharides)”. That pretty much means that anything with glucose or galactose in it, will make me sick. This disorder was discovered in my body when I was a little baby straight out of the hospital when my mother started to breastfeed. I was not able to drink my mothers breast milk because of this. I had to be fed on special milk that was sugar/lactose free. Imagine having to raise a child like that, I applaud my parents. Like I said before, this is a genetic disorder meaning that either my mom or dad had to have it right?, No. It happened to be a crazy coincidence that both my mother and father had half of the gene that carries this disorder. Meaning, neither one of them suffer the effects of the disorder since it is only a carrier but when they had a child and both those halves came together… this happened.
So dealing with Glucose Galactose Malabsorption has gotten easier over the years seeing as how I was born with this and now I am in my mid twenties. As a child, with a smaller digestive system, I could not under any circumstances eat anything with sugar in it. I couldn’t be that kid that ate a sweet treat after school or go out and get ice cream and cake on my birthday. It was rough but it was all I knew. I do have a little sister and yes she has GGM as well although for some odd reason, her’s doesn’t affect her as bad as mine did/does. She still has times where it bothers her of course but shes able to tolerate more sugary things than I am.
I grew up on almond/soy milk since I cannot have lactose and anything that said”Sugar Free” on the label was aloud. Now that I am in my 20’s, I am able to tolerate some stuff but I have to be careful. I can have a scoop of ice cream here and there and maybe a candy bar during that time of the month if I want it but I have to control myself.
Just to let you in on the rarity of this disorder, back to the National Organization of Rare Diseases, ” It has been estimated that there are approximately 200 cases worldwide. Two-thirds of those affected are females.” ONLY 200!!! It is extremely rare and gets annoying when people ask me what intestinal issues I have because all they know is that I don’t feel good all the time. There is no treatment for it, you literally just can’t eat the things that has the sugars in it. That’s it. There are disorders that are associated with GGM and I do suffer from a couple of them but we will get into that later.
I have decided to do this in parts because I know some of you may not want to sit down and read a novel about my life. This will be part one and I will leave a little “table of contents” down below for you to refer to which part your interested in reading when they are all written. If you or someone you know suffers from a chronic illness, comment below and let me know. I would love to create a community of people that we can talk to and surround ourselves with.
Thank you for reading! Have a GREAT day!