Curveball

My name is Jazz and I was born with Sickle Cell Anemia. Sickle cell is genetic blood disorder. Long story short, my red blood cells are jacked up! They are shaped like a sickle versus round like normal. They don't live as long as regular red blood cells and due to the shape they can cause painful epsisodes, "vaso-occlusive crisis". I was diagnosed shortly after birth so all I've ever know was life with sickle cell. For as long as I can remember I've had monthly appointments to see a hematologist. For equally as long my life and any plans have had to be scheduled to accomodate my monthly blood transfusions. Every 4 weeks. Every 4 weeks on the tuesday before transfusion I have had to remember to go get pre-transfusion labs drawn. I learned early what could trigger a pain crisis. I spent a large amount of time on preventive care more than anything else. Transfusion to prevent pain crisis. Extra layers in the winter time to prevent a crisis. Not spending a lot of time in the sun during the summmer. Avoiding swimming pools. Hydration. Hydration. Hydration. Decrease stress levels. Being mindful of the weather change. I'm sure you get the point. "Prevention, Prevention, Prevention". Childhood was rough I was hospitalized a lot, like every month! But I was able to maintain good grades through highschool. My mom was diligient in teaching me that I could accomplish anything I put my mind to. So I decided I wanted to be a pediatric hematology - oncology nurse. Finally its 2020 and I have landed my dream job. I'm semi successfuly managing my chronic illness and a full time job. #adulting But for the most part it feels like I have finally figured this thing out. No hospitilizations in over a year. I have the perfect work schedule. I live independently. I get my transfusions once a month. I have a little pain here and there. I may require a outpatient visit to the pain clinic here and there but for the most part I am as "healthy" as can be. For once it feels like I'm doing life with sicke cell the correct way. So imagine my surprise when my hematologist suggests that I look in gene replacement therapy because she believes I'm the "perfect canidate". It was so surprising because I thought I was doing perfectly fine. I felt like I was doing a lot better than a lot of sickle cell patients. I’m 24 years old and none of my organs are failing, never had a stroke, and I’ve been on the same dose of PRN pain meds since I was 16. I felt like I was doing just fine. I know that a large part of my success is due to monthly transfusion. Please know I’m aware that  I am extremely blessed! I just felt like my adult life with sickle cell wasn’t all bad. Even with that being said deep down I’ve always known that at the drop of a dime the tables could turn. Truthfully I’m soooo scared to suffer because I knew all the damage sickle cell could cause... my doctor kept saying “but you have an awful lot of pain even with transfusions”. The pain is the easy part. I’ve learned to live with it... I’ve learned to push through anything but especially the pain. Hell, the pain so damn determined to make a mark on the world. At first my thought and response to the clinical trial was “HELL NAW”, but after much prayer, soul searching, research, & conversation with my parents I decided to go through... so here’s to the beginning! I don’t know how I feel yet.. but I do know this... even if this doesn’t cure MY sickle cell I hope and pray that it gives them the knowledge and data needed to cure MANY MANY MANY more sickle cell patients. I’ll continue to share. Cheers to the beginning 🥂