TERRE HAUTE, Ind. (WTWO/WAWV) – Rare Disease Day is February 29 and one local woman hopes to spread awareness about a disease she was born with, but didn’t know she had for most of her life.
Allyson Newport was born with Hereditary Hemorrhagic Telangiectasia, or HHT, which is a rare bleeding disorder where blood vessels don’t form normally.
“Basically there is kind of a tangled web of vessels where normal connections form between the arteries and the veins. So that can happen in a lot of different places and we have different names as to where it happens,” Dr. Magdalena Lewandowska with the Indiana Hemophilia and Thrombosis Center, said.
Newport said symptoms started in her 30s, but she didn’t know they were symptoms of the disease at the time.
She said it started as nose and gum bleeds but in the years to come, she started feeling run down and lethargic.
“My husband and I had gone to a Pacers game and we’re walking up the steps and I couldn’t breathe and I started to pass out,” Newport said.
Newport said she went to several doctors who said she was anemic and needed blood transfusions.
She said she felt like more was wrong, which is when she stumbled upon the Indiana Hemophilia and Thrombosis Center (IHTC) while researching online.
“That’s where I first got with Dr. Lewandowska. And I walked in and she said, ‘You don’t feel good.’ and I said ‘I do not.’”Newport said.
IHTC is where Newport was finally diagnosed with HHT.
Newport said she was relieved to finally have answers to symptoms she had been experiencing for decades.
“You start thinking it’s all in your head. Especially when they keep telling you to take iron tablets. Then to find out there is an actual reason for that, it’s just like being validated,” Newport said.
Dr. Lewandowska said it’s important to self-advocate if you feel like the answers you’re getting aren’t sufficient.
“If you haven’t seen a patient with a certain disease, with the [numbers] of less than one in a million, I mean it’s really hard for that doctor or nurse or whoever is taking care of them to be super knowledgeable about that condition,” said Dr. Lewandowska.
