Sally Carty, 44, from Massapequa Park, will be entering The Encephalitis Society’s international short film competition by sharing her personal story of dealing with the debilitating disease. The winners and runner-ups for the competition will be announced on World Encephalitis Day on Feb. 22.
Encephalitis is a rare inflammation of the brain that is caused either by an infection invading the brain or through the immune system attacking the brain, known as autoimmune encephalitis. Each year, the disease affects 500,000 people globally and 20,000 people in the United States. Often misdiagnosed, the disease is a chronic neurological disorder that can impact the respiratory, muscular, digestive and nervous systems.
For Carty, her first symptoms started in 2002 after she had her second child. She experienced memory loss and extreme fatigue. Over the years, she also experienced bouts of depression and anxiety. This prompted her to see a wide spectrum of physicians including endocrinology, rheumatology and psychiatry specialists—a total of 37 doctors over the course of 10 years. However, none of the doctors were able to give her a definitive answer as to her overall medical condition.
In 2012, Carty was referred to Dr. Wright. Upon reviewing Carty’s medical history, blood work, magnetic resonance imaging (MRI) and computed tomography (CT) scans, Wright diagnosed Carty with Hashimoto encephalopathy.
“Hashimoto encephalopathy is extremely rare, estimated at approximately two out of 100,000 individuals,” said Wright. “It often goes misdiagnosed since the disease can often be disguised as other more common disorders such as lethargy, depression, anxiety and behavioral changes. As it progresses, it may lead to seizures and coma. More education and awareness of this disease needs to be done, so patients can be properly treated much earlier. What is challenging about this autoimmune disease is that if left untreated, the brain tissue is attacked by the body’s own immune system and attempts to destroy it.”
Carty was administered prednisone, an immunosuppressant drug, which gradually helped to diminish her cognitive memory problems. In addition, as part of her treatment plan, Carty underwent a blood-filtering treatment at North Shore University Hospital’s Infusion Center in Manhasset. In this treatment, a patient’s blood is removed from the body and filtered.
“I was very fortunate to be diagnosed and treated by Dr. Wright so quickly,” said Carty. “I don’t know where I would be right now without proper treatment. Dr. Wright is a knowledgeable, caring doctor and patients are fortunate to have his expertise at Northwell Health.”
Currently, Carty’s Hashimoto encephalopathy disease has significantly improved. She is now able to drive her children to their activities and participate in a car pool. One of her missions in life is to help spread awareness about this disease and other autoimmune disorders. When she learned of The Encephalitis Society’s short film competition encouraging survivors to share their story, she knew she had to participate and submit her own story.
“Through online support, I have met children and adults from all over the world who are very sick with this disease and it can be debilitating and deadly,” said Carty. “Getting treatment as soon as possible is extremely important because the brain is under attack.”
The book, Understanding Hashimoto’s Encephalopathy: A Guide for Patients, Families and Caregivers, is an excellent read for those who want to learn more about the disease, or need help understanding what loved ones may be going through.