Almost two years ago, on November 5, 2022, I lost my husband Chuck at the age of 54 after enduring Creutzfeldt Jakob Disease (CJD) for only fifty-seven days. This terrible reality highlights the swift and devastating progression of this disease and reinforces the urgency that surrounds the mission I am on today.
CJD is a rare and fatal brain disorder affecting approximately 500 people annually in the US. It can arise spontaneously, be inherited, or spread through contact with infected tissue via procedures or contaminated meat. Caused by misfolded Prion Proteins in the brain, CJD leads to dementia and ultimately death, with symptoms like personality changes, memory loss, and coordination problems developing rapidly over months. Sadly, there is currently no cure for CJD, emphasizing the urgent need for greater awareness, education, and funding to support research towards effective treatments and a cure.
Chuck passed away from the hereditary form of CJD, a particularly rare variant affecting around 15% of those afflicted by this devastating illness. His mother had also tragically died from CJD in 2004.
Fifty-seven days from the first symptom to his passing; it's unimaginable sometimes how quickly this happened. The first symptom surfaced on September 10th, 2022 when Chuck mentioned to me that he was having a hard time hearing, especially female voices. We never expected that this symptom would be the beginning of the end. We thought it was age and exposure due to his time in Iraq and Afghanistan. We made an appointment with an ENT doctor, and his hearing tests were normal. Quickly other symptoms were emerging, as he began having a hard time concentrating, his speech began to slow, and he became a bit unsteady on his feet.
Because CJD is so rare, there remains a profound lack of awareness about this disease within the medical community. Frequently, patients are misdiagnosed with conditions sharing similar symptoms to CJD but having available treatments. Consequently, our loved ones find themselves receiving treatments for conditions they do not have, offering a glimmer of false hope for recovery.
This heartbreaking scenario unfolded for us during Chuck’s first hospitalization. which began on October 4, 2022. While we acknowledged that CJD was a possibility, the initial medical opinions we received indicated otherwise and he was first diagnosed with what they thought was Autoimmune Encephalitis and then quickly pivoted to Myasthenia Gravis. He was treated with copious amounts of steroids for both conditions. After his 10-day stay the physicians treating Chuck assured us with 99% certainty that he did not have CJD, indicating the four MRIs and multiple EEGs conducted showed no signs of CJD progression. On October 14, 2022, Chuck was sent home with no definitive diagnosis and with multiple outpatient appointments for follow up. But once home he began to rapidly decline, which was a scary time for both of us as the dementia and other effects of the disease began to significantly progress. Through the help of some esteemed colleagues, I was able to get Chuck admitted into the Mayo Clinic here in Jacksonville, FL on October 27, 2022, 13 days after he was sent home from his first hospital stay. The Mayo doctors repeated all the same tests, MRI, EEG, Lumbar Puncture- and on that fateful morning of October 29, 2022, just two days after he was admitted to Mayo, the harsh reality emerged, I was informed, he had CJD. Tragically, just seven days later, on Saturday, November 5, 2022, Chuck passed away from this monster of a disease.
Our story fuels my personal commitment to collaborate with the CJD Foundation in heightening awareness, providing education, and raising funds for two critical purposes:
1. To prevent other families from enduring misdiagnosis and unnecessary treatments like we encountered at the initial hospital.
2. To secure funding for the dedicated researchers striving to discover treatments and a cure by equipping them with the vital resources they need to continue their invaluable work.
Chuck exemplified kindness, compassion, intelligence, and courage, serving as a Senior Chief Petty Officer and Intelligence Specialist in the US Navy for 28 years, and was a humble and proud Bronze Star medal recipient for the admirable work he did in 2006. He also spent over 30 years in civilian professions, including nine-years at JPMorgan Chase. Regardless of the role he played in either his military or civilian career, Chuck excelled in mentoring his team, encouraging innovation, continuous learning, and career advancement.
Beyond his professional achievements, Chuck was my best friend and closest companion. Our history spanned nearly 24-years, and we were lucky enough to spend nine years together, including six years of marriage. Together, we forged an unbreakable partnership, sharing in each other's pursuits and providing unwavering support and love.
Chuck playfully earned the nickname "Queso" after a casual conversation linking his last name, Romano, to the Spanish word for cheese. This connection led to Chuck being affectionately called Queso, and when we got married in 2016, Team Queso was established. While Chuck initially took on the role of team coach, I now carry on that responsibility, guiding our team's path.
Chuck taught me the essential lessons in leadership—integrity, resilience, courage, and, above all, love. These virtues are the pillars in which Team Queso was built upon and continue to demonstrate, ensuring triumphant victory in our quest for a cure for CJD.
Today, I seek your support, and invite you to join Team Queso. With your backing, we can continue to exemplify these qualities, striving not just to succeed but to exceed in our results. Together, we can make a meaningful impact by championing integrity, resilience, courage, and love in our quest to find a cure for CJD.
Will you stand with me in my quest for triumph over CJD?