Life and Family Foundation VA is proud our SC Warriors and celebrate living with Sickle Cell.
“I have had sickle cell since I was born, I was born in Panama so the information given to my parents was very little. My older sister has sickle cell as well. My parents were able to learn from her experiences and complications how to deal with my illness. All my life I've had to take folic acid and vitamin b12 to be well. Coming to the US was different because the conditions were better here and there was a lot more awareness about sickle cell. I had a 504 plan when I entered middle school which helped a lot however I didn’t see a hematologist every month. I had difficulty in PE - other kids would make fun of me thinking I was lazy especially in PE Class. That drew discouragement from me wanting to go to school. In my teen years I felt normal and I didn't really feel sick other than a cold. Upon having my third child, my issues started to arise with sickle cell. I started having more pain crises. It happened daily and I started searching for a hematologist myself because I didn't see one in over a decade. I got in touch with VCU and I have been in care having visits every 3 months. In August 2018, I had to go to the ER because I had a pulmonary embolism - blood clots in my lungs I also had acute chest syndrome with fluid in my lungs. They said I was very close to having sepsis and only a 50% chance of survival. This experience opened my eyes to making amends with the condition that I have. I now want to raise awareness. Although I have sickle cell, I am limitless. I’ve graduated from college twice. My kids see that I am not giving up and I want to be here for them.”
“For me (exhales) I really didn't have that many problems growing up as a child. I did not feel sick that often other than having pneumonia. My first real crisis was after I had a motorcycle accident at age 21 and that was like a truck hit me because I did not know what it was. I just felt pain. After that I made up my mind that I would have crises, but then when I turned 25 I gave birth to my child. After that, I had a stroke. I didn't understand what was going on. I felt like I should have been more educated, but I wasn't. I was blindsided. How can you have a stroke at 25 and you have a baby? I was supposed to be teaching my child how to walk, but I was relearning how to walk myself. It was like, I had to learn how to become myself again. It took a lot of faith, motivation and resilience for me to become me again.
It was about three months after the stroke that I started getting blood transfusions regularly to stop myself from having recurring strokes. It felt like another thing on my to do list and it was a lot- probably too much. With sickle cell you have to be prepared for every problem lurking around the corner. I dealt with everything by myself because no one else in my family had sickle cell. Dealing with it all by yourself, you begin to feel so alone. I constantly feel like I’m going through so much of it alone; not having someone to understand it has been my biggest struggle. It's an emotional, spiritual battle- that's why it's so hard. When I found Living with Sickle Cell, Inc. I started to feel like I had purpose.
Being involved with sickle cell patients and lwsc has helped me a lot. I don’t just fall into my illness and I found something that gives me purpose. That’s what lwsc is for me. It’s hard to put into words but it gives me drive, hope, and ambition. We need some kind of light because it’s hard to find the light at the end of the tunnel. The pain never leaves us It’s like a cloud...so we have to find our own way out of the rain.”
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