My name is Saida Mahoney, I am 28 years old, and I live in California. I was born with an extremely rare genetic disease called Partial Trisomy 8q Duplication Syndrome, or Partial Trisomy 8q Syndrome for short.
This genetic disease affects me in all aspects of life, having a huge impact on me neurologically. I have navigated life battling this condition with strength and determination.
As a result of my disease, I have experienced seizures. Epilepsy wasn’t a condition widely discussed in the IDD community when I was growing up. I have had focal seizures, grand mal seizures, idiopathic seizures, and absence seizures.
As an adult, I still deal with absence seizures, but I haven’t had any serious seizures recently. I am incredibly thankful for my medical team, including my wonderful neurologist and neurogenetics doctor. I’m also grateful for the support from my primary care doctors.
I am using my voice to raise awareness for those living with epilepsy due to rare diseases. I also strive to educate others to support individuals with epilepsy who have intellectual and developmental disabilities, as well as rare genetic diseases.
I am proud to be a National Rare Disease Advocate and Activist, a National Disability Advocate and Activist, a National Beauty Pageant Queen, writer, author of 9 books, athlete, performing artist, college student, podcaster, and so much more.
I love doing everything I can to help people, and advocating is incredibly important to me.
I may have chronic conditions, but they definitely don’t have me. I have epilepsy, but it doesn’t define who I am as a woman. I am defining what it means to live life with epilepsy!