The story of Saida
Hello my name is saida I am 24 years old I am from Oakland California
My birth date is September 22nd 1996
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 will also be starting my journey in participating as a Athlete with the SONC I am also in the process of getting involved to play college sports as well
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 also go to music school as well
I am part of the Girls Scouts and BSA Scouts as well
I also love to play sports and travel
When I was in high school I have done choir and theatre as well as dance
My life has challenges I have 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 I hope he or she can find comfort and support in reading this
I have 2 rare chronic diseases that I am diagnosed with
I was born with a rare chronic genetic disease called Partial Trisomy 8q Duplication Syndrome or for short partial 8q duplication syndrome, or you can call it Partial Trisomy Of 8q and or Partial Duplication Of 8q, or Partial Trisomy Chromosome 8Q Duplication Syndrome.
My genetic condition is congenital meaning I was diagnosed with it since I was a baby
It is also known as a chromosomal duplication disorder
My condition has affected every cells and dna of mine
I was born with anomalies due to my genetic condition
My genetic disease affects my growth stature due to my height Level
and it also cause me to have a few facial abnormalities as well
It also caused me to be delayed in walking I wasn’t able to walk right away or talk that well when I was a little girl.
In my case my genetic disease is a mild and moderate medical condition.
I also have Asthma and Scoliosis and other disabilities as well I have also been diagnosed with over the years growing up
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 is a complex genetic disease it also affects my brain function of how it functions.
My genetic condition is very very Rare
My genetic condition also causes me to be handicapped due to how my genetic disease affects my Brain and how it causes me to struggle on a daily basis in Life.
My genetic disease is also a neurodevelopmental disability due to all the ways I have been affected by my condition.
As I get older I will have either a few or some changes due to my genetic disease as time go by
The Anomalies from my genetic disease is what cause me to be at risk of other challenges in life due to my genetic condition and the extra chromosome I was born with
I have other disabilities due to my genetic disease that I have been diagnosed with over the years
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 others such as (Pyodermia Sinifica Fistulans, Velpeau’s Disease, Fox Den Disease,
Verneuil’s Disease, Acne Conglobata, Apocrine Acne, 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 form of the spectrum as I get older I am hoping that my HS doesn’t get worst as time go by and it 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 went 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 have struggles of my mental health disorders Post Traumatic Stress Disorder (PTSD) , Generalized Anxiety Disorder (GAD) and Major Depression Disorder (MDD) as well that I struggle with a lot due to my diagnosis and struggles from dealing with bullying and more etc.
I used to self harm for a few years due to emotional pain due to 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 struggle with my anxiety due to things that is hard for me based on past experiences and memories from all the difficulties that I have dealt with.
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 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
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