SEVERN, Md (WMAR) — A rare disease turned a Maryland man’s life upside down and it all started with one symptom. Now that he has a treatment plan that works, he’s sharing his story, hoping it helps others to get diagnosed early.
“I’ve always had little nose bleeds. Never bothered me. Never interfered with anything,” said Mike Young, who lives in Severn.
Young noticed his father and grandmother would get them too.
“He’d be like two hours sitting on the couch, Kleenex’s and stuff and it would wipe him out,” said Young.
His father Don was diagnosed with Osler-Weber-Rendu disease, and sought treatment but nothing worked.
With no cure, Don died from internal bleeding in 1991.
“For many patients, they die away by just internal bleeding and there’s nothing that we really can do,” said Galiatsatos.
It propelled Young to get tested. He found out he had what is now called HHT, or Hereditary Hemorrhagic Telangiectasia. It’s a genetic disease that causes blood vessel malformations that can impact almost every organ.
“Depending where they form, they can cause a variety of symptoms. If they are in the brain, they can lead to strokes. If they are in the lungs, they can lead to low oxygen levels,” said Dr. Panagis Galiatsatos, an associate director of the HHT Center at Johns Hopkins.
Doctors were able to rule out lung and brain issues and the disease was manageable until 2019, when his nose bleeds became severe.
“It just became out of the control. I was keeping control of it for all this time,” said Young.
“I passed out upstairs in the bathroom upstairs and went to the hospital and got two units of blood. I was like ‘Wow, this is really serious’.”
“He had some of the lowest iron levels I’ve seen in any patient,” said Galiatsatos.
Galiatsatos said it’s normal for the disease to change over the course of a person’s life.
“You have patients who were diagnosed as teenagers and had nose bleeds. Now they are in their 50s and they are having a lot more GI bleeding,” said Galiatsatos.
Young sought help from the HHT Center at Johns Hopkins. They see patients from all over the world and have a wide array of providers to help address symptoms and come up with treatment plans.
“It’s such a rare disease that it’s hard for people to know of and know how to manage appropriately,” said Galiatsatos.
Even after multiple nose procedures, Young’s condition didn’t improve. He was going on year two of not being able to work or continue his passion of performing on stage as a guitarist in multiple bands.
“I couldn’t get out of the house in the morning and it shut me down,” said Young.
It wasn’t until he started on a monthly IV treatment last fall that his nose bleeds were manageable again.
“It’s a bad situation but I’m fortunate I don’t have some of the other problems because the lung AVMs and the brain problems, people die,” said Young.
“Knowing we can give our patients their lives back, that’s key,” said Galiatsatos.
At 57 years old, the same age his father was when he died, Young is hopeful and grateful testing showed he didn’t pass the disease on to his two children.
“I always say it’s the best thing I did in this world would be not passing it down,” said Young.
Now he’s spreading awareness by participating in patient Facebook groups and sharing his story.
“There’s people online that just don’t know what’s going on,” said Young. “They can really get help if they knew. I try to explain or help them where to go but it’s not easy.”
Young said what makes it so difficult is that most doctors just don’t know about it.
“I go to the doctor and I tell them I have this disorder and they talk about it a little bit and they go excuse and they would leave the room and return with a book and they’d be turning pages,” said Young.
Young said being your own advocate could save your life.
“The way we’ve helped patients with HHT live a “normal life” to the same life expectancy as everyone else is early detection,” said Galiatsatos.
If you’re experiencing unexplainable nose bleeds, Galiatsatos recommends asking your doctor about HHT.