"I had no idea how bad I felt," Local woman shares her life-changing diagnosis with a rare disease

02/29/2024

By: Rachel Law

TERRE HAUTE, Ind. (WTHI) - More than 300 million people worldwide are living with a rare disease, according to the National Rare Disease Day organization.

To honor that statistic, National Rare Disease Day falls on February 29, a rare date.

Allyson Newport fits into that statistic, but she also chooses not to be defined by her disorder.

Newport found out nearly four years ago that she has hereditary hemorrhagic telangiectasia, also known as HHT. She didn't begin having symptoms until she was in her thirties and didn't receive a proper diagnosis until another thirty years later.

HHT caused random nose and gum bleeding for Newport. The disorder means her blood vessels are abnormal and cause bleeding.

After the passing of her husband, Newport decided she needed to advocate for herself and research her symptoms. That's how she found the Indiana Hemophilia and Thrombosis Center in Indianapolis.

"I had no idea how bad I felt," said Newport.

Dr. Magdalena Lewandoska knew that Newport had HHT fairly quickly. She said because Newport advocated for herself, she saved herself from further issues.

Because Newport now knows the correct treatments she needs, she says she can live her life without feeling like she's being held back. 

"Something may look okay on the outside and people power through. It may lead to worse outcomes," said Dr. Lewandowska.

Newport and her doctor encourage others not to ignore their symptoms but rather to listen to their bodies.