Living With a Disorder

At nine years old I learned I had a rare disorder called MPS( the full term is mucopolysaccharidosis for the cool science nerds out there.) MPS is a group of metabolic storage disorders which are inherited at birth. This disoder affects certian enzymes in the body. Certian types of MPS are more severe and affect neuroligcally. My version is most mild which is nice, yet still a total bummer.

I've received treatment through enzyme replacement therapy since I was nine years old. The treatment for MPS patients was actually discovered and approved for treatment in 2004 the very year I found out I actually had a disorder. Originally I recieved treatment through infusions in my veins in my arms. Yet a couple years ago I decided to get a a port which has helped make treatment a lot easier and way less painful.

I get my treatment at a hospital called Advent Health originally called Waterman Hospital. Advent Health will always have a special place in my heart. I've met so many wonderful people from the nurses to the volunteers, and other amazing members of the staff as well as just the patients. We've lost friends along the way, yet the memories we've made I'll always cherish. Advent Health is a faith based hospital. My family and I truly agree God brought me there for a great purpose.

Through my treatments a love for reading grew and grew. During my treatments you will always find me reading a book either on Kindle or from an actual book. I prefer reading from hardcovers, yet also enjoy a good paperback. This love for reading eventually led me to writing my own stories and becoming my creative self.

Being born different can be challenging. I've experienced so much. Some memories are very good while others not so much. You learn and grow up pretty fast when you go through medical stuff at such a young age. I was nine years old. I'm 28 now. Honestly I always think about or have on the back of my mind what ifs like what if I wasn't ever diagnosed? What if I wasn't born with this disorder? What if I went to this hospital or infusion center instead? Those questions are always rolling around my mind, yet like I've already mentioned above I'm always grateful for the memories and lessons.

Lessons are good. They help us to grow and challenge us to face our fears. It also helps us to have an open mind and notice others are also going through a lot and we can always lend a helping hand to help each other go through our storms together.

Do I wish I had MPS? Honestly no, yet I'll always be thankful for what this disorder has brought into my life. I'm always praying and hoping a true cure is found. That will be so amazing. There has to be a cure, yet a lot must happen to get there. It's wild to think about all the scientist, doctors, and others out there researching and looking for cures and treatments. Health care is so important, yet also very challenging. Those phone calls are always really stressful and difficult. So many times I've called for help and haven't gotten it cause they don't understand or it's just complicated. No one really knows unless you've been there truly.

If you have some rare disoder or are facing a medical crisis please understand I care and so do so many others. So many times you get ideas like no one cares cause of a bad situation, yet it's not true. There are many good, wonderful people out there who do truly care and want to help. I'm thinking about praying for you. Hope is far closer than we assume.

Thank you for reading my post. If you actually read all of this that's awesome. I don't always want to talk about my disorder, yet I know it's important to do so. Take care friends. Hang in there and always be creative!