So, I’m not exactly a genius with math or statistics, but I can tell you that our fellow Siena classmate is truly one in a million. Sophomore, Emily Elder, has a rare genetic disease called a Mandibular Arteriovenous Malformation. Now, I know what you’re thinking: what is that? And how does it affect her in her everyday life? Emily is extremely unique and I believe her story should be shared with you all, so I decided to interview my lovely friend, Emily.
In your own words, can you tell me what an AVM is?
An AVM (aka Arteriovenous Malformation) is the misformation of blood vessels in utero which leads to a tangle of arteries and veins. AVMs can be found anywhere throughout the body but are typically found in the brain. Mine is located in the left side of my jaw and can cause severe bleeding, swelling and pain. My malformation is so rare that there are only a handful of cases worldwide which means treatment techniques are still in the experimental stages. Currently, there isn’t a cure, I will forever have this condition.
How has it affected your life?
This is a hard question to answer. With any new diagnosis, there is a learning curve. You need to learn how to live your life while balancing your health and your new medical needs. There has been many ups and downs. I’ve had to learn to advocate for myself and mature a lot faster than my peers. My diagnosis wasn’t a slow process, I found out I had an AVM when I was 15 after my oral surgeon attempted to extract a tooth but instead caused a horrifying amount of bleeding. I spent the next five days in Albany Med trying to figure out how to come to terms with this new and scary diagnosis. All and all I’ve had 16 operations in a total of three different hospitals. I think being a teenager and trying to juggle some very adult issues has made me stronger. I still struggle with the pressure this illness places on me, I won’t give you the impression that it isn’t hard, but I’ve learned to accept that this is my new reality and try to make the best out of the cards I’ve been dealt.
Is it something you commonly tell people?
Obviously, this isn’t a conversation starter. “Hi my name is Emily and I’m a rare disease survivor.” I’d say I’m pretty selective on who I let in. When someone learns you’re chronically sick they tend not to see much else. I want others to see me for my personality and my good qualities. My AVM is something that happened to me and I think the way I handle it shows a lot about my strength and perseverance but my AVM isn’t who I am.
What advice can you give to others who know someone with a chronic illness?
To someone who’s a friend of someone with a chronic illness, I’d say just be there for them. Accept that you will never know exactly what it’s like for them but let them know that you’re there and willing to listen. Simply acknowledging that they face struggles that you don’t makes them feel understood and accepted.
How has coming to Siena affected your chronic illness?
Coming to Siena has forced me to become a bigger advocate for myself. Siena offers several accommodations that I’ve taken advantage of and I’ve forced myself to have those awkward conversations with my professors. However, most of all I’ve had to learn how to make friends when you don’t exactly have the same struggles as other college students. Trying to fit in has definitely been one of the hardest parts of moving to Siena.
Finally, do you find that your friends and fellow Siena colleagues are supportive of your AVM?
Of the select few people that I tell about my AVM, the majority have all been supportive. I think sharing my experiences has been eye opening for them just as their point of view has been for me. This semester I had the opportunity to start a chronic illness / pain support group on campus with Dr. Bradway at the Counseling Center. Being able to fully relate to the struggles of other chronically ill students has been a major source of support for me here on campus.