By Anaya Jain, Shreya Kancharla, Aanya Khattar, Laasya Mallapragada, Anisa Patel

Feb. 13, 2024

SAN JOSE, CALIF. — Arteriovenous malformation (AVM) Aware is a student-run organization that has been increasing public knowledge of AVM, a rare disease, through social media campaigns, in-person presentations, and community engagement projects.

AVM Aware has an established connection to Silver Creek’s HOSA, or Health Occupation Students of America, and has been taking proactive steps to raise disease awareness in the Evergreen community. 

Recent accomplishments by this organization portray their dedication and impact, with over 8,000 interactions and a distribution of around 3,000 informative bookmarks. An active social media platform such as their Instagram allows AVM Aware to successfully engage with the community and expand its reach.

Arteriovenous malformations remain a medical rarity, yet their impact on those affected is significant. AVMs are abnormal tangles of blood vessels that disrupt blood flow and oxygen delivery. While they can occur in various parts of the body, such as the brain or limbs, they do not occur frequently, affecting approximately 10 out of every 100,000 individuals.

Brain AVMs, in particular, present greater risks due to their ability to weaken blood vessel walls, leading to brain bleeds. 

Symptoms of this disease vary widely, but often include seizures, headaches, and numbness. However, many are also asymptomatic. According to the National Institute of Neurological Disorders and Stroke, individuals can be diagnosed with AVMs at any age, but it is usually seen in people above twenty years of age. If a person does not have symptoms by their late 40s, the AVMs usually remain stable and are not likely to produce symptoms. 

Despite the challenges posed by AVMs, treatments such as endovascular embolization and radiosurgery help manage symptoms and reduce the size of AVMs. Endovascular embolization involves the use of a catheter, or a thin tube used in medical practices, to inject a substance into the artery feeding the AVM, and sealing it off to reduce blood flow. Radiosurgery is a type of radiation therapy performed by a neurosurgeon, where intense beams of radiation stop blood supply to the AVM. 

However, the rarity of AVMs has resulted in challenges in diagnosis and limited research efforts. In addition, there is little funding set aside for this condition due to lack of researchers who are aware of it. Many individuals are misdiagnosed due to this limited knowledge, leading to poor understanding of the condition and limited treatment options.

AVM Aware had connected with the medical community for deeper knowledge. Through collaboration with Harit Agroia, a medical professor, AVM Aware gained valuable insights into the impact of their activities and identified opportunities for further community outreach. This collaboration shows the importance of creating connections between medical professionals and student-run organizations to better support patients affected by AVMs.

This AVM organization’s goal is to continue its mission of raising funds to help hospitals and support groups, increase public presentations, and spread its message through its social media presence to reach a broader audience. By taking advantage of the power of the community, AVM Aware is heightening awareness and support for individuals living with AVMs. 

Ahaana Baheti, a student from Silver Creek High School was interested in this topic and expressed her appreciation, saying, “I love how you guys are raising awareness within our area, allowing for people to become more educated.”

Stay informed and stay aware. Remember that it is only rare until it happens to you. Join the movement to raise awareness about arteriovenous malformations today.

Follow AVM Aware on Instagram @avm.aware for more information and updates.