My Journey: Fighting The Big Fight Against My Rare Diseases

June 27, 2022

Author: Saida Luvenia Mahoney Saida Mahoney Partial Trisomy 8q

Hello my name is saida mahoney I am from California I am a young adult who is diagnosed with 3 chronic rare diseases I was born with a rare chronic genetic disease called Partial Trisomy 8q Duplication Syndrome.

it’s a very rare genetic condition that affects my brain function, my growth stature and so much more.

I am also diagnosed with another rare chronic disease called Vascular Ring also known as Congenital Heart Disease (CHD)

I also have another rare chronic disease called Hidradenitis Suppurativa (HS) it is a extremely painful disease to live with I have been to the hospital numerous times due to my HS.

I have learned how to stay strong through my battles with my rare diseases I have learned how to be a strong advocate and I am using my voice and using my platform to help make a difference in this world and to help others who may be struggling with their rare diseases.

I learned to become resilient and so much more etc

I am a proud activist

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