Welcome to my story

I know you’re scared. I was scared too. Sitting in that doctors office, after a prick on my finger turned into doctors checking if the machine was broken, to blood tests every 6 months, medication, and restrictions of many of my favorite things in this world. I was terrified, and so were my parents. It is always unsettling to be diagnosed with a condition, especially when it’s a condition that many doctors had never heard of, much less knew how to treat. However, I am here to tell you that it gets better. I know that may be hard to believe in the early stages of food restriction or doctor’s appointments, but it will get better. It will not, however, go away. Managing this will become easier, there will be more leniency with food, and this will eventually become your life. The hardest part is feeling like you are alone in this, yet you aren’t. Your family and friends, even if they don’t share the restrictions you need to make for yourself, will be there by your side and they will make it better, I promise. I am here too. I understand your thoughts and mindset and you are not alone. 

 

So, why am I writing this to you, reader. I have built this website as a love letter to my younger self, and it is built due to the lack of resources like this that exist. When I was diagnosed, if my parents and I had had access to a real person’s story and experiences, it would have changed the way we approached this. I was in fourth grade when I was diagnosed, and my family and I had no idea what we were doing, and neither did the doctors. The only answer was to eliminate and wait. I had many delicious and lovely things taken away, replaced by “light” or “reduced” versions which seemed the opposite of delicious or lovely. Yet in time—and it took time—we began to figure it out. Now this is not to say that I would consider myself an expert in all ways to deal with sitosterolemia, far from it. I do, however, believe that hearing how others have dealt with the same thing would have helped my family figure out the right path for me, instead of the feeling of jumping off a cliff into unknown waters.