Our final sickle cell conqueror is Chanise! Here is her story!
1.)How old were you when you found out you had sickle cell? I was diagnosed at birth with Sickle Cell Anemia. I can remember all the way back to 5 years old knowing I have Sickle Cell. I was the 1985 Sickle Cell Poster Child in Cincinnati.
2.) How were you able to cope with school and sickle cell? I worked hard in school and stayed low key about it. It was in my file at school so if a crisis happened my mom was called.
3.) How did sickle cell affect your childhood?Most of the time in school I would not tell anyone because children and some adults were ignorant to what Sickle Cell is. I was talked about a lot an sometimes bullied at school because I was petite for my age and my eyes were jaundice.
4.) How do you manage sickle cell and still maintain a thriving career? I have Sickle Anemia, it does not have me! I have become so educated on Sickle Cell and how my body is affected by it, so I keep the upper hand. This means I stay hydrated with water a lot, juices and I also drink Gatorade and Power Aid. I rest often, don't smoke, drink every blue moon (less than 5x a year), eat good and eliminate things or people that cause stress. These thing keep me out of the hospital and out of the crisis zone. I can't stress enough how important rest and hydration is in order to avoid Sickle Cell Crisis.
5.) Has sickle cell limited any areas of your life? No, I'm not limited and I believe the only limits are those you create or allow others to create for you. My parents taught me that I was beautiful and I could do what any child or person could do if that was what I wanted and what I was called to do. No, I can't run 2 miles in 5 min, but I can run. It may take me longer to get there, but I will get there and that's how I live. I pace myself, push myself and encourage myself which encourages me to encourage others. I am a warrior!
6.) Do you have regular pain, related to sickle cell? How do you cope? Generally, my pain comes if I have done too much and not rested enough. My body usually tells me when I have gone to far and I have learned even in having a strong and encouraging mind and spirit, you have to listen to your body. The body always gives signs that sometimes we ignore and have ignored so much we miss the signals. You certainly cannot ignore your body's signals! I rest when my body has told me I have went too far, I lay around at home and relax. Read,get a massage, hydrate and do nothing until I recoup. Having support like family or friends to check in on you to say "Hey you have been doing a lot lately, you need to rest" also helps. Support is everything but you have to be willing to listen to those looking out for you.
7.) How often are you in a crisis? How does it affect your life and routines? Can you describe a crisis to us? Because I do all of the things I listed previously it has been a while since I have had a crisis. When I have crisis I just rest so that it does not get too out of control where I have to see the doctor. Crisis for me is different it use to start as pain in my lower back like extreme throbbing, now it's fatigue or swelling with pain crisis. I have been successful enough when it happens to get it under control in a few days without hospitalization. At all costs though I prefer to avoid it as best I can but we all know that this disease can be very unpredictable.
8.) How has sickle cell affected your personal life? Sickle Cell has given me a different outlook on life, I'm grateful for all I have and I advocate a lot on my behalf and other's living with this disease. My children (which most including doctors thought or said I could not have), family and friends are also educated on Sickle Cell Anemia. Often times my friends or family my refer other's with Sickle Cell to me to comfort, encourage or council on how I live with and cope with crisis pain and pain management. That brings me joy to know that I can help or support someone else who is also a warrior.
9.) What is a typical day like living with sickle cell? Fluids, fluids, fluids and a positive outlook on each day as another chance to encourage, fight and push forward. Not just surviving but living, having fun and not putting yourself in a box.
10.) What advice would you give to those with sickle cell or those who want to learn more? Get educated as much as you can on Sickle Cell Anemia then start educating others. Do research, talk to doctors in hemotology/oncology, talk to parents, schools and network. This is more common than most think and getting the information out to the world and public just as often as cancer, leukemia etc. is mentioned so should Sickle Cell Anemia. This is of great importance.