Spotlight: Ramon Reed - don't let people limit you!

This month's warrior spotlight is Ramon Reed - actor & advocate

Hemoglobin Genotype: hemoglobin SC (2nd most common form or sickle cell)

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Share your personal journey with sickle cell disease and how it has impacted your life.

I like to think about sickle cell as a character in my life. 

It has given me a world of experience in pain and how to overcome it.  I now see that experience I received from South Carolina as a kid now transferring into my adulthood. I remember my worst sickle cell crisis in 2015 where I had to completely learn how to walk again.   I was just so focused on finishing the end of that school year with flying colors and that’s exactly what I did. 

I say all of this to say I’ve developed such an unwavering focus in my everyday life due to the trials and tribulations I endured at a young age.

What are some common misconceptions about sickle cell disease that you would like to debunk?

The main one is definitely dispelling the stigma/prejudice that those who are in a crisis that go to the hospital are just drug addicts looking for a “fix” and that sickle cell only impacts black individuals.

How do you manage the symptoms and challenges associated with SCD in your daily life?

WATER, WATER, WATER. I try to drink at least a gallon a day. 

Exercise is very important to me as well because it makes me feel good, and keeps my body strong, which then helps me fight off any sort of sickness.

Describe a particularly difficult moment you've faced because of SCD and how you overcame it.

A lot of the difficult moments I’ve faced as it pertains to sickle cell happened in my younger years. It would be things as small as me not being able to swim with all of my cousins during the summer due to my health, and had to watch them have fun, or dealing with pain on a day-to-day basis while being determined to maintain a normal routine. Although those moments were tough and at times made me emotional, sickle cell has shown me, and continues to show me, how different and special I am from others - which I embrace and embody in everything that I do - and that reflects in every aspect of my life. Especially with the career path that I chose at the young age of 11.  

What advice would you give to others living with sickle cell disease or to their caregivers?

At times I feel like we let people limit us because of the disease that we have, and then we subconsciously restrict ourselves because we allow others to do it to us. 

So the advice I would give to my fellow warriors is to try to do any and everything under the sun that doesn’t jeopardize your health. 

     We are powerful.

     We are brilliant.

     We are STRONG.

     Let’s operate that way.

I understand the difficulty of being a caretaker and how it's a job (if you will) that’s overlooked. So first, I want to say that I see you and YOU ARE NEEDED. The advice I would give to them would be to try and be as receptive and understanding as possible when it comes to providing care to sickle cell warriors who may be in a crisis. Sometimes it’s difficult for us to navigate through our pain, but if you learn our triggers and healthily inform yourselves on the disease as a whole, it makes the experience easier on both ends.

What are some ways you advocate for yourself and others in the sickle cell community?

Not only with me spreading awareness publicly on my social platforms. I host events partnering with hospitals to provide those with sickle cell with entertainment, resources, and inspiration and I also inform others on the importance of blood donation as it relates to SC.

Lastly, what is one important lesson or insight that living with sickle cell disease has taught you?

It has taught me that we don’t have as much time as we think and oh how selfish would I be to take the day that I’ve been given for granted.