Everyone Can Be an Advocate

I chose to become a "professional" sickle cell advocate around 7 years ago. I was out of work and out of school, largely due to the toll sickle cell had had on my body. I kept getting sick, missing work, and school.

Fighting for a better life

I knew from a young age that I always wanted to fight for a better life for sickle cell patients around the world, and I wanted to make use of my time. I reached out to the President of the Sickle Cell Disease Association of America, Inc. and expressed my interest in becoming an advocate. I inquired what I needed to do to actualize my goal. Fortunately for me, there was a grant that had just been funded concerning this very topic, and they were having a weekend training in Atlanta, Georgia.

Finding support

I was chosen to participate and I went. Not only that, but several other pieces of training and certifications were going on not too long after. As someone who is low income, even though I was interested, I didn't always have the funds. I learned to be open and honest, and most people will do what they can to help. So, I emailed all of these courses, told them that I wanted to attend, but I did not have the funds to do so. I was someone who lived with sickle cell who wanted to use my training to help the community.

Every one of them obliged in some way. Either paying for my registration, hotel, flight, or all of the above. Why do I bring this up? A lot of people ask me how can they do what I do. How can they advocate for the sickle cell community on a more professional level? My humble advice?

1. Be knowledgeable about sickle cell

If you are serious about being an advocate, please attend training, workshops, certifications, and licensure courses that can verify and prove that you know what you are talking about. Lived experiences are indeed valuable, however, a credentialed lived experience is even better.

2. Be willing to sacrifice

There have been courses, workshops, conferences that I wanted to attend, but I had to pay my own way to attend. You have to spend money to make money. You have to invest in yourself in order for someone to invest in you. Try to budget to spend your own money to attend at least one event a year if you can that will advance your knowledge on sickle cell disease.

3. Be truthful

If there's something you don't know, be open and honest that you don't know and that you will try to find out.

4. Have fun

As an advocate, you may face topics that can be draining or depressing, however, find out ways how to have fun. If you are flown out to another city/state to talk about sickle cell, explore, interact, don't just give a presentation and sit in your hotel room.

These are just a few simple steps I try to share with those who ask me. Approach pharmaceutical companies, government agencies, nonprofit organizations, there is always a need for the lived experience. Make your voice heard!

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