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Antonio Maltese - Journey with Rare

Featured Stories
12/13/2022

TREND Community is proud to introduce TREND Ambassador, Antonio Maltese:

“My name is Antonio and I am a 25-year-old person living with 3 rare diseases. I study political science with a minor in German at Virginia Commonwealth University in Richmond, Virginia, although currently, I’m on medical leave of absence with 15 credits left.”

The combined total number of Americans living with a rare disease is 1 in 10, which might seem somewhat contrary to the nomenclature; however, each of the 10,000 rare diseases impacts fewer than 200,000 Americans. Antonio’s journey living with 3 rare diseases makes his story statistically unique:

“Back in 2017, I tested positive for a rare terminal disease named Huntington’s disease. Huntington’s disease is a rare neurological disease that affects gene-positive patients in their 50s, 60s, and sometimes earlier. Two years later, I was diagnosed with a rare bone-killing disease named avascular necrosis (also known as osteonecrosis or AVN). AVN is a bone-deteriorating disease that cuts the supply of blood off to my joints and bones. Another 2 years later, I was diagnosed with a rare blood disease named antiphospholipid syndrome. This disease is a rare blood clotting disorder where my blood is too thick and will not clot properly.”

“My life has been engulfed and plagued by rare diseases in one way or another. Huntington’s disease scares me the most, avascular necrosis hurts me the most, [and] antiphospholipid antibody syndrome is the most unpredictable disease.”

Living with a combination of Huntington’s disease, AVN, and antiphospholipid syndrome has been overwhelming for Antonio:

“To say that life has been easy for me or that I am not in excruciating and debilitating pain every single day would be a farce. I wake up every single morning with excruciating pain from AVN that can lead to being bedridden. Recently, I received the results of an MRI indicating that I’m entering the early stages of Huntington’s disease. On top of those conditions, I also suffer from complications related to antiphospholipid syndrome. I often feel like each day is my last.”

Understandably, Antonio struggles to balance the physical, mental, and spiritual toll of living with 3 rare diseases:

“Huntington's disease is an incurable and terminal neurodegenerative brain disease. It has been euphemistically nicknamed ‘The Devil’s Dance’ based on earliest anecdotes of the disease. It is devastating, and it has ravaged some of my family members and will destroy mine if we do not find a cure.”

“Avascular necrosis has taken away so much from me. I have had both hips removed and replaced, my left shoulder replaced, and have had surgeries on both shoulders and both knees. So far, AVN has been located in 7 bones.”

“These diseases have disabled me both financially and physically.”

What is truly remarkable is Antonio’s commitment to raising awareness and finding solutions for himself and others living with rare diseases:

“I have spoken at conferences, events, internships, to various delegates—and each day I push for a cure. I am a big proponent of using whole-genome sequencing for all of those at risk of detectable diseases. Gene editing could provide solutions for many of those with rare diseases.”

“I’ve lobbied with the EveryLife Foundation [for Rare Diseases]. I am currently an intern at TREND Community. I’ve even had the honor of working with the mayor of Richmond.”

Antonio approaches life empowered by his spirituality and sense of purpose:

“Trust in God. Trust yourself. God, my service dog Aria, and my mother have kept me going. We have purpose. We have meaning. Let’s use our collective powers for good and raise awareness and shed a light on these cruel diseases to end them once and for all.”

Like all of those with rare disease, Antonio’s story is in progress, and at TREND Community, we are proud to walk alongside him every step of the way. We look forward to sharing more of Antonio’s journey in future blog posts and updates.

Please see the following for additional information:
Antonio Hope for Huntington’s:
https://hopeforhuntingtonshome.wordpress.com/
Huntington’s disease https://www.ninds.nih.gov/health-information/disorders/huntingtons-disease
Osteonecrosis (AVN)
https://www.niams.nih.gov/health-topics/osteonecrosis
Antiphospholipid syndrome - https://www.ninds.nih.gov/health-information/disorders/antiphospholipid-syndrome

Matthew Horsnell
Matthew HorsnellTREND Community Director
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