About Us
My Journey with Sickle Cell
Living with Sickle Cell Disorder (SCD) has shaped so much of my life both in ways I expected and in ways I never could have imagined. For a long time, I struggled to accept myself and what I was going through. I felt different, like I was constantly missing out. The unpredictability of this condition brought a lot of stagnation, I watched others move forward while I felt stuck, battling my own body and mind.
There have been scary hospital visits, moments of frustration and times where I felt unheard, where my pain was questioned or overlooked. Getting the right care has never been simple, and navigating the healthcare system with a condition that many still don’t fully understand has been exhausting. But even outside of hospitals, SCD affects so much more than just physical health it impacts confidence, friendships and mental well-being.
Why I Created Crisis Control
I started Crisis Control because I know what it’s like to feel alone in this journey. I’ve seen how Sickle Cell Disorder (SCD) doesn’t just affect the person living with it, it impacts families, friends and caregivers too. I help care for my younger brother, who also has SCD and seeing him go through the same struggles I went through pushed me to do something.
When I was younger, I didn’t really have a community, not because one didn’t exist, but because it was too difficult to access. I was often too unwell to attend meetings or events and even when I wanted to connect, everything felt out of reach. Resources felt scattered, hard to find, or filled with overwhelming information that didn’t offer the clarity or support I was looking for. I tried to build or find a community online, but even that felt overwhelming.
It's hard to navigate SCD alone I’ve been in situations where I’ve found myself in hospital, in pain, yet still helping other sickle cell patients advocate for themselves. A lot of patients get overlooked it’s hard for some to speak up to receive the treatment they desperately need. Many go without proper protocols being followed and end up being the last to be seen, even while suffering immense pain.
I just hope to make things easier for everyone with SCD and for everyone looking to support their loved ones living with the condition. Crisis Control is here to ensure that no voice goes unheard and no one faces this battle alone.
That’s why Crisis Control exists, to make sure no one else feels lost or alone in their SCD journey. I want to build an online space that is accessible and easy to navigate where support is just a click away, where real experiences are shared, and where those affected by SCD can connect without barriers. Because no one should have to struggle in silence.