Despite it all, Saida fights for all of us
Congressional District: CA13
Chronic Pain, Genetic Disease, Heart Disease, Lung Disease, Mental Health, Rare Disease, Skin Disease
Issues and Challenges
Saida has encountered: Access to Expert Providers, Access to Medicine, Medical Records Access, Mental Health Access, Rare / Underserved Disease, Abuse (Mental, Physical, Elder), Disability, Discrimination (nonmedical), Invisible Illness, Suicide / Self-harm
Hello everyone, my name is Saida Mahoney. I am 26 years old, I am from California, I am also Jewish, and I am a proud student at American River College, Butte College, Sierra College and Folsom Lake College. I am a music, dance, theatre, film and songwriting major I also enjoy doing cheer as well.
I will also be starting my journey in participating as a Athlete with the Special Olympics Of Northern California. I am also part of the Aktion Club and I am serving as its President. I am also proud to be part of the Miss Amazing pageant I am thankful that I was crowned the 2021 California Miss Amazing Miss Queen title I am forever grateful. I was also able to go to the Miss Amazing Nationals Summit in Nashville it was such a huge wonderful experience I am forever thankful and grateful that I got to participate in the ceremony. I am honored that I was able to represent my state at the nationals and grateful that I get to continue my journey with them as I am getting older. I am also part of the Bay Area Thrive Program.
My life has had numerous 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 I hope he or she can find comfort and support in reading this.
I have 3 rare chronic complex diseases that I am diagnosed with. I am also diagnosed with multiple disabilities, Chronic Medical Conditions, Mental Health Disabilities and Physical Disabilities.
I was born with a rare chronic congenital genetic disease called Partial Trisomy Of 8q, partial 8q duplication, or you can call it Partial Trisomy Of 8q, and or Partial Duplication Of 8q and lastly Partial Duplication Of 8q Syndrome. It is also known as a chromosomal duplication disorder. My genetic disease affects my growth stature and causes oral dysphagia which affects me in different ways when eating and drinking. I also have craniofacial abnormalities due to my genetic disease.
I also have Asthma and Scoliosis and multiple 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. If I didn’t get the surgery I would have died.
My genetic condition is a complex genetic disease it also affects my brain function of how it functions and all the ways it causes me to have numerous difficulties and challenges in life.
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.). HS is a rare chronic illness.
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 different treatments for my HS when I am not in the hospital I have a in home treatment plan for my disease when I’m not in the hospital. I will have painful cysts and scars from my disease too me when I look at my scars I view them as my tiger stripes because I am fighting hard and I am in the biggest battle ever with my disease. I have been having so much pain, bleeding and swelling and discomfort due to my disease and it has been very very hard. I recently had my first part of Surgery done as a result of my HS.
I am also diagnosed with a third chronic rare disease called Vascular Ring the formal name for my rare disease is called Congenital Heart Disease (CHD). Vascular Ring is a condition that affects the heart of how it is developed and shaped and more.
Due to my Vascular Ring my heart is not shaped and developed like the average heart my cardiologist said I don’t need to get any surgery done for my disease and I don’t need any medication
Being diagnosed with 3 rare chronic diseases is hard but I am going to fight harder than ever and I will never give up I won’t back down and I will not go quietly
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. My friends told me that they didn’t want any disabled person around them.
Sadly there are no cures for my rare diseases, my disabilities and my medical conditions I hope someday that will change.
I also have struggles of my mental health disorders Post Traumatic Stress Disorder (PTSD) , Generalized Anxiety Disorder (GAD) Panic Disorder and Major Depression Disorder (MDD) and I also have a eating disorder called Binge Eating Disorder (BED) I also struggle with Social Anxiety as well I struggle with a lot due to my diagnosis and struggles from dealing with bullying and more etc.
I used to self-harm for 9 years due to emotional pain due to severe bullying and I was always feeling depressed. I used to want to commit suicide by jumping from the Golden Gate Bridge and often times I struggled with wanting to commit suicide by using Motrin. I also tried to commit suicide numerous times I chose not to do it I got into music and it saved me.
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 and the sexual assaults I went through, being molested at 9 years old, being Raped at 12 years old and going through Domestic Violence as well I went through so many difficulties and I was dealing with so many flashbacks and panic attacks and so much more where I needed professional help right away. 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 also have another medical condition Tourette’s Syndrome (TS) it is a neurological disorder that make everything very difficult and challenging for me everyday 24/7 I struggle with having my tics and vocal tics and motor tics as well it makes going to school hard and it makes social interaction hard as well. I struggle with having tic attacks when I am very, very anxious and I often feel like I lose full control of my body when the tic attacks happens.
I also deal with getting discriminated from going to other colleges and I struggle with not being able to be welcomed to do certain activities and programs. I have lost so many friends due to my Tourette’s syndrome.
Another disability of mine that I struggle with is having Autism Spectrum Disorder I have Aspergers Syndrome it makes certain social skills interactions hard i also struggle with knowing how to handle conversations too I also struggle with stimming and so much more etc. I am also diagnosed with Learning Disabilities as well.
I am so thankful for all of my wonderful medical teams who are helping me out with all my disabilities and my chronic medical conditions and so much more I am also thankful that they are supportive towards me emotionally. I will stay strong and keep fighting hard.
I am a Survivor of Self Harm, of Child Abuse, of Suicide Attempts, of Domestic Violence, of Child Sexual Abuse (CSA), of Child Sex Trafficking (also known as Human Trafficking), of Emotional Abuse, of Child Sexual Exploitation, and of sexual assaults. It was extremely traumatizing and an emotional experience for me going through everything I went through.
I learned how to get through everything and get myself help and resources and I want to giveback to help others feel like they have a strong support and advocate. I now have myself a very very strong support system.
I have Lived decades as a Silent sufferer I was dealing with the weight of the pain for such a long time that as I continue to get older I couldn’t take the weight of the pain I went to my doctor appointment I had scheduled and I reached out to my mother and told my mother everything my mother knew about some of the things I went through but not all because every time I wanted to open up about everything I ended up getting so emotional.
When I told my doctor about all the abuse I went through she was very supportive and she made me feel so much better and she told me about this wonderful organization called RAINN. I dialed the RAINN hotline number and I got to talk to the advocate about everything I went through and the advocate was so supportive I got connected to numerous support services and support groups and it was such a huge healing process and healing journey for me.
I felt so much happier and I felt free from all the emotional weight that I carried for so many years it felt so good being able to get help and having support from my amazing mother and my friends and my fantastic medical team as well.
I am also thankful for NAMI as well.
I am a SuperHero who has fought through all of the pain and struggles and so much more.
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, Reba McEntire, Dan Fogelberg, Dottie West, Lacy J Dalton, Connie Smith, Shelly West, Porter Wagoner, Tom Petty, Poco, ZZ Top, Tammy Wynette, Hank Locklin, Kenny Rogers, Garth Brooks, Little Big Town, Tom Petty, Journey, Foreigner, Jack Tempchin, 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 many more artists and bands
I am thankful for all of my good Amazing friends I am so thankful for my miss amazing family and friends as well
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 don’t want anyone to be struggling
You Are Not Alone and You Are Never Alone
My Wattpad username is WONDERGIRLSAIDA you can access all 8 of my books and all of my other books I will be working on and publishing later on on the Wattpad platform
I am a Survivor!!!
I am a Fighter!!!
I am a Warrior!!!
I am a Advocate!!!
I am a Activist!!!
I am a Superhero!!!
Thank you so much for reading my story and thank you so much for reading my e book novels and listening to my podcasts I really truly appreciate it.
My Motivation and Inspiration
I have found being around others who have rare diseases inspirational to me I learned how to become a better and stronger advocate and activist for the rare disease community I also found doing my podcasts extremely helpful for me my mother inspired me so much as well as my friends and my pageant Sister Queens