My name is Saida Mahoney and I am 24 years old. I’m a full-time college student and proud to be a performing arts major – I love music, I love dancing, and I love theater. My goal is to continue my performing arts studies and have a professional career in music, dance, and theater. I was recently crowned Miss Queen at the 2021 Spring California Miss Amazing pageant, and I am starting my journey as an athlete with the Special Olympics of Northern California. I love to play sports, and I am part of the Girl Scouts, BSA and Aktion Club.
I am particularly proud of these achievements because my life has challenges, and I wanted to share my story to bring awareness for others who are diagnosed with rare diseases and disabilities, as well. I hope that anyone who may be struggling with any medical conditions or disabilities can find comfort and support in reading my story.
I was born with a rare chronic congenital genetic disease called Partial Trisomy of 8q, partial 8q duplication (also called Partial Duplication of 8q). It is a chromosomal duplication disorder that I was diagnosed with as a baby. My chromosome 8 has an extra copy of some information and effects my height and growth and caused delays in my ability to walk and talk when I was a little girl. This rare disease has caused me to be both physically and mentally handicapped. When I was 2 years old, I had to have emergency surgery on my lung as a result of my genetic condition and the anomalies that I was born with – if I hadn’t gotten the surgery, I would have died. My condition is a complex genetic disease and a neurodevelopmental disability. It affects my brain function and causes me to have numerous difficulties and challenges in life and causes me to struggle on a daily basis.
I have also been diagnosed with another rare chronic disease called Hidradenitis Suppurativa (HS), which is a rare chronic illness. I am undergoing different treatment plans and I have been in the hospital lots of times due to my disease. Having HS is a very overwhelming condition to have. My HS has caused me to have pain and discomfort where I had to go to the hospital to get help. As part of the disease, I will have painful cysts and scars and I have been having so much pain, bleeding and swelling and discomfort. While it was initially Stage 1 (mild), it has recently progressed and is now a Stage 2 (moderate) disease.
In addition to the two rare conditions, I was also diagnosed with scoliosis, and Tourette syndrome, a neurological disorder that causes vocal and motor tics.