My CVID Life - Aimee T

Patient Leader

I was diagnosed with Common Variable Immune Deficiency (CVID) over 5 years ago. It was not an easy journey to be diagnosed by a doctor. I was the child that was always ill and in and out of hospitals. I knew the hospital staff in my area way to well. Walking pneumonia was just a normal occurrence. I was known as that bendy twisty girl with soft bones and always sick. Playing stump the doctor became not fun as I got older. Initially we were hoping maybe i had cancer at least that would be a diagnosis instead of we just quite are not sure. I was diagnosed late to where I do have lung involvement and also most of my organs like my appendix and gull bladder have been removed. I have had over 30 surgeries for not only organs but bone breaks as well. My son is on the Autism Spectrum as well and has marfanoid characteristics. I realized how important it is to advocate and share my story because I know how hard it is to find a doctor to understand such a rare disease. I also knew it was difficult to share what was going on with a family member who just could not feel the pain running through my bones and my body. I remember when I was searching for others when I first was diagnosed and wanting support. I want to show everyone that even someone so small like me can be a difference and to continue to speak up and support one another. I have been diagnosed with not only CVID but Ehlors Danlos, Sjogrens, and other primary immune deficiency. I still play stump the doctors and was diagnosed late to where I do have lung involvement. I was lucky this year to be part of advocacy day on capital hill through the IDF Foundation. I have been an active support to my fellow peers who feel alone. I know how important it is to have support not only from a family member. but also those who similar diagnosis.

Location

Las Vegas, NV

Nominations

Rookie of the Year
My CVID Life - Aimee T

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