Monthly Archives: June 2018


Sickness we all have been sick at least once. Then you have those that have a rare disease and are sick everyday. How do those with the rare disease do it? Those that have a rare disease do it one day at a time. You wake up not knowing how you are going to feel. I know I have a rare disease. Each day I live a normal life work, kids, activities, and home. While I may seem ok on the outside I have a rare disease called Hailey- Hailey that causes each day to be an adventure.

There is no cure for my disease. Hailey- Hailey is a hereditary genetic disorder and I am missing a chromosome in my genetic makeup. Each week I research new medicines, trials, and homeopathic treatments. The good news about my rare disease is I can manage it most days and I choose for it not to define me. As you go through your day and see people you never know what they are dealing with inside. Many people try hard to put on a brave face everyday and face the world no matter their circumstances. Let’s try to smile and make someone’s day a little brighter. If your hurting tell a friend I am sure they would love to support you any way they can.

I do struggle with discussing my disease but have decided to use my voice to help others and see if one day we can find a cure for Hailey- Hailey and many other rare diseases.