Hello, #iamhope, I am Trena Myers, the CEO of Rare Wish. I want to be real with you and share my stories and journey with the hopes that it will inspire and give others hope for their future.
It took decades to receive my rare disease diagnosis when time after time I was told it was all in my head. However, I never gave up hope that I would have answers as deep down I knew that there was something just not right after a two year straight bout of strep throat. I took it upon myself to learn more about my particular rare disease, hypogammaglobinemia, yes, it is a mouth full!
The more I learned, not only did I learn more about myself and my invisible illnesses (yes, multiple), but I learned to have a voice for myself and for others who didn’t know how to use their voice or were to shy/afraid, etc. I became an advocate for myself and others. I would find myself in state meetings to speak with legislation and state leaders to try to help educate them on rare diseases and the importance of them getting more involved so they could understand the magnitude that the rare disease community faces, whether it’s a lack of medical resources, medical teams uneducated, lack of support from insurance companies or the financial burdens that comes with a rare disease.
A girlfriend of mine that I had met through my rare disease support group had coined me the “Zebra Queen” because of my love for pageantry and competing so that I had a platform to speak on behalf of the rare disease community. Shortly thereafter she had passed away from her rare disease complications. It was then that I used the Zebra Queen in her honor.
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