Tag: sickle cell

Sickle Cell Warrior of July: Dezii

Hey everyone!

For so long I wanted to tell my story with sickle cell disease. But my story is and never will be the same than another person and I want other sickle cell warriors to talk about their experiences, I wanted them to have a voice. So, I reached to some friends, acquaintances and even some complete strangers to ask them if they wanted to tell their own story. Luckily I found people that were on board to be interviewed by a total stranger, and tell their story. If I continue to find people I may do this every week (so come forward my precious), but for now this will be a monthly post.

For the VERY first “Sickle Cell Warrior of the Month”, I’ve had the pleasure to meet Dezii and this is her story.

  • Jo = J
  • Dezii = D

J : Welcome! Can you tell my lovely audience your name, age and where do you live.
D : Hey, my name is Dezii, I’m 26 years old and I live in Cincinnati, Ohio.

J : My first question is, have you always know you had sickle cell disease ?
D : Yes! My mother found out when I was about a month old, I was actually misdiagnosed when I was 2 weeks old, but they finally discovered what I had.

J : What type of sickle cell did they diagnose you with? SS; SC or AS ?
D : I am diagnosed with Sickle Cell SS

J : As this is a genetic disease, are you the only one in your family with Sickle Cell or do you have other family members with this disease?
D : I’m the only lucky one in my family to have it :S

J : Can relate. How does sickle ell disease affect your social life ? Do your friends and family understand it?
D : To be honest, when I was younger, my mom did everything she could for it not to affect my social life. So growing up I tried doing the same thing. But I’m grateful that my family and friends understand when I’m having a “bad day”.

J : If you do work, what kind of job do you do and has it always been what you wanted to be or did your disease put barriers on your dream job ?
D : I used to work, I was a server. That was definitely not my dream job, but the thought of going back to school stresses me out and gives me anxiety which often turns into a pain crises.

J : So when you did work, did you disclose that you were sick or did you try to hide it ?
D : No I never hid my illness when I worked, I feel like it’s a part of me, so why hide something I have to live with anyway.

J : Let’s talk about crises for a bit. What was the worst crisis you’ve ever experienced?
D : My worst crisis was when I was about 10 years old, I had pain all over my body and I immediately got admitted into the hospital for 2 weeks. I had to let the doctors and God do their magic at the time.

J : Talking about the hospital staff. What do you think about nurses and sometimes even doctors not knowing what sickle disease is? They learn about it very lightly in school except they do a specialization on blood diseases.
D : I think it’s CRAZY and definitely should be taught and learned. There’s so many of us that have SS or SC living it every single day, doctors and nurses not getting or understanding how to treat us is absurd!

J : So you obviously think there should be a change in how the medical staff takes care of us.
D : Absolutely!! More than 90% of the time we are looked at as drug addicts or drug seekers, that’s not fair.

J : What would you like people who don’t know what sickle cell disease know?
D : I would like people to know that this is real! This isn’t fake, we’re literally waking up everyday fighting with our own body, praying one of the theses days we will be pain free!

J : And lastly, what would you like to say to any person with person with sickle cell disease who may feel alone and discouraged?
D : To the person with sickle cell who may feel alone and discouraged hear me when I say, I get it and I understand. I would be lying if I said it gets better but it definitely gets easier!

I want to thank Dezii, for being my very first guest and also she didn’t mind that she was the very first person I interviewed! If you want to reach out to Dezii, you can contact her on Facebook at Dezrion Camille.

Next week we will be talking about the different types of Sickle Cell Disease! Stay safe everyone and see you next time!

My experience with school.

Hello hello,

2 weeks ago I made a post about how it is to live in a day with sickle cell, while I do not go to school at the moment, because it’s officially summer break, I feel that I should explain my experience.

As an European, it’s not the same school system as in America, we have 3 years of kindergarten then 6 years of elementary school and finally 6 years of high school, we don’t have what you call “middle school”. Anyways, I was always alone, not because I was shy or anything, I made a couple of friends and when I was sick for a couple of weeks, they forgot about me and didn’t understand why I was missing school so much. Especially young kids, they didn’t understand what was a disease and even if I tried to make them understand with my 8 year old brain, the couldn’t. So for 9 years I was alone, sometimes kids would play with me but then they wouldn’t and I got really insecure about telling people about my disease. The only times I would play was with my older sisters and sometimes my youngest sister, but they weren’t always there, so I usually spent it alone.

I was in this kind school where they would teach from kindergarten to the end of high school and once I graduated elementary school, I obviously stayed in that school. Well that was the worse decision of my life. That whole year of 2011, I was hospitalized 15 times, I wasn’t even in school for 2 months. You can imagine what the kids said: “She’s skipping school”, “Does this disease even exist?”, “She’s pretending”. I became depressed and without surprise, I failed that year, but to be honest, at that moment, I didn’t even care. I wanted to be a normal kid, without this disease, and I wanted to end it. At 13 years old, I didn’t want to live anymore. Mental illness has a big impact on our health, I was going to the hospital with pain, but the doctors never found anything alarming because my body was reacting to how I was feeling. Depression is still something I’m dealing with after 8 years, but it’s definitely not as bad at that time.

After that painful year I switched schools and my life went up from there, of course there is still some bad moments, nothing is perfect unfortunately, but I met my best friend, whose still present today, and the school was very understanding even though they had no idea what sickle cell was. When I was in the hospital, they sent me my school work and even a tutor to come help me. I will always be grateful for them, thanks to them I never failed a school year and I graduated with honors.

College was different for me, new school, my anxiety levels were so high. But I was pleasantly surprised. I lived in a dorm and to be honest I was so scared, it was the first time that I was going to be without my family who knew what to do in case I had a crisis, and my roommates were complete strangers who I KNOW didn’t have any idea what was sickle cell disease. But as I said, I was pleasantly surprised by their response, they accepted me wholeheartedly and learned how to deal with my crises.

While my dorm life was going well, my school life was going horribly. The workload was so much more than high school and I was struggling so much. The stress was getting to me and when we get stressed, we get pain. I tried to tough it out for about 2 years, but it was too much for me, so last year I made a decision.

I left college and my dorm, entered a formation center to become an interior designer, this formation center is really focused on building our own company and while the workload is still much, I only have to go to school 2 days a week, I get to stay home and rest for 5 days. I miss my friends but this is the best decision I’ve ever made.

Anyways this is all for today peeps, see you next week!