Life With Two Genetic Conditions and A Love for Music.
Meet Saida! Saida is a 24 years old, full time college student from Oakland, California. Saida is studying performing arts, dance and music. She has lived with chronic medical conditions since birth, and despite various other medical diagnoses throughout her life, she has always found inspiration through music, dance and the theatre. Saida wants to share her story with the Fight Like A Warrior Community in hopes that others struggling with their own medical conditions, illnesses and disabilities may find comfort and support in her journey.
Hello! My name is Saida and I have two 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. You may also hear it referred to as Partial Trisomy Of 8q and or Partial Duplication Of 8q.
My genetic condition is congenital, meaning I was diagnosed with it since I was an infant. It is also known as a chromosomal duplication disorder. My condition has affected every cell and DNA I have. Due to this genetic condition, I was born with anomalies as well. In my case, it has also caused me to have mild to moderate medical conditions including Asthma, Scoliosis and various other diagnoses 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 the anomalies from the extra chromosome.
My genetic condition is a complex genetic disease and it also affects my brain function. My genetic condition has caused me to be identified as handicap, however, I don’t let my genetic condition stop me from doing anything.
In addition to the genetic conditions I have mentioned, I have also been diagnosed with another rare chronic disease called Hidradenitis Suppurativa (HS), also known as Velpeau’s disease and or Verneuil’s disease. Having HS is a very overwhelming condition to have. My HS has caused me to have so much pain and discomfort that I have had to go to the hospital to get help in order to find better treatment. I am currently getting treatment for my HS. Despite the pain and discomfort, I am thankful that my HS is on the mild form of the spectrum.
Due to the genetic conditions I have and the various additional medical conditions I have been diagnosed with, I have experienced a lot of bullying and the loss of many friends throughout my life.
Sadly there is no cure for either of the two genetic medical conditions I have. I hope someday that will change.
Having two rare, chronic medical conditions, scoliosis, asthma and additional various disabilities as well has had a huge impact on my life. It is also overwhelming sometimes, both emotionally and physically.
Despite it all, I have learned how to stay strong and to never give up. I am very inspired by music artists and bands who I have grown up listening to; this is what helps me get through it all.
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