JENISON, Mich. — For the past 13 years, Emily Schafer has lived under the cloud of a condition she calls both a blessing and a curse. October is Arteriovenous Malformation (AVM) Awareness Month, and Emily hopes you’re paying attention.
“I see it as a disadvantage and an opportunity,” she says. “It’s an opportunity for me to bond with amazing people, and then it takes away so much from me.”
AVM is a condition that causes abnormal connections between arteries and veins. Typically, when blood flows from arteries to veins it passes through capillaries, which allows the blood to slow to a normal flowing speed. AVM patients lack those capillaries, which means the flow of blood doesn’t slow.
“AVM, you don’t have the capillaries,” says Dr. Todd Vitaz, a neurosurgeon with Spectrum Health Group who treats AVM, “so the blood flows under very high flow, under very high pressure from artery to vein, and that causes turbulence of flow, and that causes the vessels to become enlarged and engorged with blood. Instances of AVM range greatly from patient to patient and can yield a multitude of symptoms, including seizures, headaches, bleeding and rupturing, aneurisms, heart failure and neurological issues.
Because of her condition and its risks, Emily has had to miss out on a lot. She risks serious or even life-threatening injuries from even the simplest of activities like many sports or even riding a roller coaster.
But what hurts Emily the most - and what she hopes people will come to realize this month - is the emotional side effects.
“It’s been really hard, especially lately,” she says. “I’ve been really emotional about it."
It’s already hard enough for Emily and other AVM patients to miss out on many things they want to pursue, but when taunting and bullying come into play, that’s perhaps the most painful part of it all. "People are cruel, something that hurts me, and I don’t think anybody understands that. I would tell them I struggle a lot with all that’s happening and that I just wish they would look at it from my perspective, that it’s something that hurts me physically and emotionally.”
That's why AVM Awareness Month is needed.
Treatments for the rare condition are available, but research projects to better understand AVM are few and far between. What research that does exist on how the disease begins, forms, and grows is still relatively new.
“The incidents of AVMs are very low,” says Dr. Vitaz, “and because of that, there’s not really been a lot of money invested into understanding why they happen, what causes them to happen.”
Emily’s case was genetically inherited; she was diagnosed at the age of just 10 months, thanks to an early screening. But, Dr. Vitaz adds, everyone is at risk. AVM can develop later in life, too.
“Patients are living a normal life and then all of a sudden they get this horrible headache, and they come in to the ER, and now they have this life-threatening disorder that they’ve just been told about,” said Dr. Vitaz.
To learn more about AVM or make a donation to the Aneurism and AVM Foundation, you can visit their website.
