Raising Awareness for Rare Diseases and Seizures

My name is Saida. 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, but 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 Intellectual Developmental Disorder (IDD) community when I was growing up. I have had focal seizures, focal aware seizures, tonic-clonic seizures, idiopathic seizures, and absence seizures. I overcame lots of struggles, such as being discriminated against and dismissed. I even struggled with being accepted in the epilepsy community due to my genetic disease and IDD conditions. 

I am thankful to my medical team, including my wonderful neurologist and neurogenetics doctor, and the support from my primary care doctors. After being involved in counseling and having appointments with my neurologist, I was able to get involved with the epilepsy community, and I found so much love and hope within the Epilepsy Foundation. It has been a life-changing experience for the better. I know I am in good hands in the community, and I am forever grateful to have support and a family within. The Epilepsy Foundation has inspired me to become a better and stronger woman living with epilepsy. I feel extremely confident in having discussions about my condition. I am empowered to advocate for everyone living with epilepsy.

As an adult, I still deal with my focal aware seizures and absence seizures, but I haven’t had any serious seizures recently. I am using my voice to raise awareness for those living with epilepsy due to rare diseases and IDD. I strive to educate others to support individuals with epilepsy who have intellectual and developmental disabilities, as well as rare genetic diseases.

I love doing everything I can to help people, and advocating is incredibly important.
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 nine books, an athlete, a performing artist, a college student, a podcaster, and so much more.

I may have chronic conditions, but they don’t have me. I have epilepsy, but it doesn’t define who I am. Instead, I am defining what it means to live life with epilepsy. Epilepsy does not define who you are as a person, and you can do anything and everything in this world. Do not feel discouraged by your condition, and do not feel ashamed that you are full of wonderful abilities!