"My Journey with Complex Medical Conditions - A Health Update" Please like and subscribe.
Channel: Michael DeFiore 
Date: 14/03/2024

My Gofudme link is listed below 

https://gofund.me/c46b0664

"In this personal health update, I share the latest developments in managing my complex medical conditions. I have osteogenesis imperfecta, a brittle bone disease, along with Ehlers-Danlos syndrome which affects my collagen. I also have polycythemia. 

Over the past few months, I began experiencing new cardiac symptoms including chest pain, dizziness, and shortness of breath. Due to my vascular type of EDS putting me at high risk for aortic issues, I was referred to a cardiologist. I underwent a variety of tests from February to April 2022 to evaluate my heart.

Tests included an echocardiogram, holter monitor, CT angiogram, and transoesophageal echocardiogram. Concerning findings were discovered, such as an aortic aneurysm, enlarged aorta, patent foramen ovale (PFO), and left atrial appendage. Due to these results and my genetic conditions, I will require lifelong cardiac monitoring for risks like a potentially fatal aortic dissection. 

In addition to my heart evaluation, I share updates from recent neurological testing. A brain MRI from January 2024 showed significantly more atrophy than my previous 2013 scan. At only 31, this raises concerns for early-onset dementia. Nerve conduction and EMG tests were also performed to investigate neurological symptoms.

While understandably frightened by managing my complex care needs long-term, I maintain hopes for the future. I dream of one day starting a family through options like surrogacy or adoption. Other goals include independent living with a house and driver's license.

However, I recall facing educational challenges without an early learning disability diagnosis. I struggled in school and was unable to graduate due to a family scam.

Through sharing my personal health journey, I aim to help others with rare conditions. I request support through donations to my GoFundMe or sharing this story. I intend to continue updating my YouTube channel to document living with multiple chronic illnesses. Viewers are encouraged to subscribe for future videos chronicling my courageous health battle."