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Joseph Szydlowski has always experienced nosebleeds. They got worse as he aged, but he just thought it was something normal for him. That is until he had a heart attack in 2018 at the age of 42.
During his hospital stay, he was found to be severely anemic due to his daily nosebleeds. He then met Dr. Magdalena Lewandowska with the Indiana Hemophilia and Thrombosis Center who diagnosed him with HHT – Hereditary Hemorrhagic Telangiectasia.
HHT is a rare vascular disorder in which some blood vessels do not develop properly and can cause complications like anemia and abnormal bleeding. Parents with HHT have a 50 percent chance of passing on the abnormal gene that causes HHT to each of their children.
While none of his children showed signs or symptoms of the disease, after Joseph’s diagnosis, he and his wife Susan had them tested. Doctors found two of their three children also have HHT. Their eight-year-old son, Case, a patient of IHTC’s Dr. Manjusha Kumar, underwent a procedure to correct tangled blood vessels in his lung to prevent life-threatening complications. This likely won’t be Case’s last procedure.
Both Case and his 18-year-old sister, Eve, now receive regular scans and routine bloodwork at the IHTC to stay ahead of any complications. Their dad is also receiving regular care for internal bleeding caused by HHT that they were not aware of as his care team tries to prevent another heart attack or stroke.
In the U.S., HHT is underdiagnosed, but by identifying the disorder and undergoing regular preventative treatment, HHT patients can live fairly normal lives.
“Sometimes we ignore the little things and just assume it’s the way it is,” said Susan Szydlowski, wife and mom. “We are hoping to bring awareness of this disease and education to hopefully save others who might be suffering from, but are unaware of HHT.”
It’s estimated nearly 1,400 people in Indiana have HHT, and many like the Szydlowskis are unaware or undereducated about the disease.