*Warning - sensitive subject areas are spoken about within this article if you have been affected by the subjects included please see the links below for mental health support and guidance*
Hi, my name is Saida Luvenia Mahoney and this is my journey with rare disease
I am a 24 year old college student, studying at American River College in Sacramento, California.
I was born with a rare genetic disease call partial trisomy of 8q, or partial 8q duplication. It is also known as a chromosomal duplication disorder.
Put simply, I have an extra copy of some information from chromosome 8, which affects my DNA and cells, causing some abnormalities.
As well as being born with some facial abnormalities, my condition has stunted my height, delayed my ability to walk, and I could not speak well when I was young.
I have also since been diagnosed with asthma and scoliosis as a result of defects caused by my condition, and at two years old, had to have emergency surgery on my lung due to a ring defect. If I had not received the surgery, it could have been fatal.
I have also been diagnosed with hidradenitis supprativa (HS), which is another chronic genetic disease. HS causes me great pain and discomfort, but I have started an injection treatment plan to help me get it under control.
Sadly, there are no cures for my medical conditions, but I hope that someday that will change.
I have also struggled with my mental health, and suffer both from post traumatic stress disorder (PTSD), social anxiety and Tourettes syndrome. I struggle 24/7 with my tics, as I have both motor tics and vocal tics. My tics can make school and social interaction very difficult.
My PTSD stems from bullying and abuse I have had to deal with growing up. I have lost friends and had people tell me that they do not want disabled people around them.
Having rare chronic medical conditions, mental health disorders and other disabilities has made a huge impact on me, it can be overwhelming, physically, mentally and emotionally.
For a few years when I was young, I was so depressed that I turned to self harm and, on one occasion, even attempted suicide.
But I have learned how to continue to stay strong and keep my head held high. I will stay strong and keep fighting hard.
I am very inspired by music artists and bands I have grown up listening to, such as The Eagles, Dolly Parton, Tom Petty and Martina McBride.
When I was in high school, I was part of the choir and did theatre. Now I am at college, i am majoring in performing arts and hope to have a professional career doing music, dance and theatre. I love doing music. I love dancing and theatre. It means the world to me doing performing arts, and I couldn’t ask for anything better.
I wanted to share my story to help bring awareness to my diagnosis, so that those of us with rare diseases don’t have to feel alone or overwhelmed.
I have also written an e-book to help bring awareness to rare diseases called Surviving: Made To Battle.
Thank you so much for reading my story.
Saida's e-book can be found here
* If you have been affected by the issues discussed in this article please reach out for help to those around. Helpful charities are also there to lend a hand: www.mind.org.uk www.samaritans.org *