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J0VANNA's story

hello, my name is J0VANNA! i was born with a rare genetic disorder called TSC: TuberousSclerosisComplex 1 on Chromosome 9, it is one of 6,000 rare genetic conditions in the world. TSC causes benign tumors to grow in the brain and other vital organs like the heart, lungs, liver, kidneys, eyes and skin. i thank God that i was only mildly affected by TSC. i have lesions on my skin and kidneys. others are not so fortunate. despite being mildly affected, i get checked every year by the same geneticist that has seen me for the last 20 years to check up on me and to see if i have developed any new lesions. TSC affects people differently and no two persons, even twins, will have the same symptoms. this is something I would want to shine a light on because this condition is very rare.

in 2019, i was diagnosed with severe OCD and anxiety disorder. i think part of the anxiety comes from my fear of how TSC may affect me in the future. before receiving this diagnosis, i was in a bad place. i really didn’t know what was going on with me. i had these repetitive and irrational thoughts that just wouldn’t go away. after suffering for a while, i got help.

i also began to write because it helped me focus my attention away from my irrational thoughts. i ended up writing and recording a song, “Brain on Fire”, about my struggles with OCD and anxiety as part of my healing process. i know that talking about mental health issues may not be easy but it is a vital part of getting help. i hope that my song gives people the courage to talk about their mental health and to seek help because it is okay to do so. much love, light and healing ❤️‍🩹


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