Bullied because of her rare disease
Chronic Pain, Genetic Disease, Lung Disease, Mental Health, Skin Disease
Issues and Challenges
Saida has encountered: Abuse (Mental, Physical, Elder), Discrimination (nonmedical)
Hello my name is Saida, I am 24 years old from Oakland California.
I am a full-time student in college. I’m proud to be a performing-arts major. My goal is to graduate college and continue my performing arts studies at the University level and have a professional career doing music, dance and theatre. I go to music school as well and when I was in high school I did choir and theatre as well as dance.
I will also be starting my journey in participating as an Athlete with the SONC. I am also in the process of getting involved to play college sports. I love doing music, I love dancing and theatre, it means the absolute world to me doing performing arts and I couldn’t ask for anything better. I am also part of the Girls Scouts and BSA Scouts and love to play sports and travel.
My life has challenges. I went through a lot growing up, and over the years and I wanted to share my story and bring awareness of what I go through so that whoever else is struggling with any medical conditions or disability can find comfort and support in reading this.
I was born with a rare chronic genetic disease called Partial Trisomy 8q Duplication Syndrome (aka Chromosome 8q Duplication). It is a genetic condition that is congenital meaning I was diagnosed with it since I was a baby. It has affected every cell and DNA of mine and is a neurodevelopmental disability.
My genetic disease affects my growth stature (my height). It also causes me to have a few facial abnormalities as well. It caused my walking to be delayed; I wasn’t able to walk right away or talk that well when I was a little girl. Still, my genetic disease is considered a mild or moderate medical condition.
I have Asthma and Scoliosis and other disabilities as well, and other disabilities that I have been diagnosed with over the years.
When I was 2 years old I had to have emergency surgery on my lung due to a ring defect as a result from my genetic condition and also due to the anomalies from the extra chromosome that I was born with. My genetic condition also affects my brain function. I struggle on a daily basis.
As I get older, I will may have some changes due to my genetic disease.
I don’t let my genetic condition stop me from doing absolutely nothing.
I have also been diagnosed with another rare chronic disease called Hidradenitis Supprativa (HS) also known as Pyodermia Sinifica Fistulans, or Velpeau’s Disease, Fox Den Disease, Verneuil’s Disease, Acne Conglobata, Apocrine Acne, or Apocrinitis.
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 to find ways for it to get better because I was in so much pain. I am currently getting treatment for my HS. I have Stage 1 Hidradenitis Supprativa.
I am thankful that my HS is on the mild end of the spectrum. As I get older I am hoping that my HS doesn’t get worse and end up becoming a moderate and or severe medical condition for me. I am also hoping that I don’t end up having to get surgery done for my Hidradenitis Supprativa or any type of operation done. If I ever do need to have surgery for my Hidradenitis Supprativa I will keep my head held up high and be strong
I have gone through so much bullying due to my genetic condition and I have went through losing many, many friends due to my genetic condition, cause my friends told me that they didn’t want any disabled person around them.
Sadly, there are no cures for my 2 medical conditions. I hope someday that will change.
Having 2 rare chronic medical conditions, scoliosis, asthma and other disabilities as well have put a huge impact on me it is also overwhelming sometimes as well both emotionally and mentally.
I also struggle with my mental health disorders - Post Traumatic Stress Disorder (PTSD), Generalized Anxiety Disorder (GAD) and Major Depression Disorder (MDD) as well as from dealing with bullying and more etc. I used to self-harm for a few years due to emotional pain from severe bullying and I was always feeling depressed. My PTSD comes from all the abuse I went through with all the bullies I have dealt with growing up and abuse from a friend as well.
I have learned how to stay strong and to never give up and I am very, very inspired by my music artists and bands who I have grown up listening to.
My Motivation and Inspiration
My music artists and Bands who have inspired me so much and motivated me to be brave and inspired me to raise my voice and follow my dreams are The Eagles, Justin Bieber, Glenn Frey, Don Henley, Linda Ronstadt, Katy Perry, Dolly Parton, Timothy B Schmit, Joe Walsh, Pat Benatar, Bob Seger, Foreigner, Journey, Peter Cetera, KT Oslin, Demi Lovato, Van Halen, The Doobie Brothers, Michael McDonald, Martina McBride, Trisha Yearwood, Huey Lewis and The News, Merle Haggard, Carla Olson and The Textones, Jackson Browne, Loretta Lynn, Vince Gill, Amy Grant, JD Souther, The Beatles, Steve Perry, Elvis, Dan FogelBerg, Demi Lovato and so many more artists
I wanted to share my story and bring awareness to my diagnosis so that others who are going through the same thing don’t have to feel alone or overwhelmed. I want to help others all around the world who are struggling tremendously with chronic medical conditions mental health disorders and disabilities and so much more. I want to help make this world a better place for those who are struggling and going through so much difficulties and more etc. I want to share my story to help uplift everyone.
If you ever want to reach out to me my Twitter is @DREWSLOVERSMOON and @DREWSALLNIGHTER my Instagram is @DREWSLOVERSMOON
Thank you so much for reading my story
Much Love, Saida