Everyone Can Be an Advocate
Last updated: June 2022
I chose to become a "professional" sickle cell advocate around 7 years ago. I was out of work and 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. I wanted to make good 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.
I was chosen to participate and 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 and 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 and wanted to use my training to help the community.
Every one of them obliged in some way. Either by paying for my registration, hotel, flight, or all of the above. Why do I bring this up? A lot of people ask me how they can 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 a licensure course. These can verify and prove that you know what you are talking about. Lived experiences are indeed valuable, but a credentialed, lived experience is even better.
2. Be willing to sacrifice
There have been courses, workshops, and conferences that I wanted to attend, but I had to pay my own way. I believe that you have to spend money to make money. You have to invest in yourself for someone to invest in you. Try to budget to attend at least one event a year if you can. This will advance your knowledge of sickle cell disease.
3. Be truthful
If there's something you don't know, be open and honest about that and try to find out.
4. Have fun becoming a sickle cell advocate
As an advocate, you may face topics that can be draining or depressing. However, find out ways to have fun. If you are flown out in another city/state to talk about sickle cell explore and 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, and nonprofit organizations. There is always a need for the lived experience. Make your voice heard!
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