My girlfriend Dana was diagnosed with a Cavernous Angioma in her brain stem when she was only 16. Right before I met her in 2011 she had a life threatening surgery to remove the majority of it, but the surgeons couldn’t get all of it due to its proximity to sensitive nerves. Since then we both have been working on making an organization to raise awareness and understanding about what Cavernous Angiomas are called Project A2.
Cavernous Angiomas are a rare malformation of blood vessels in the brain, and most people have trouble understanding what they exactly are, even some doctors!
Symptoms of this rare disease are very different depending on the angioma’s location in the brain and the person’s lifestyle. One person can have headaches, nausea, and dizziness whereas another may have painful migraines, loss of motor skills, numbness, and suffer from seizures. It gets misdiagnosed all the time and unlike other illness such as Breast Cancer, Alzheimer’s, and Parkinson’s there is usually no readily available protocol or treatment in place to help someone with an Angioma when they go to the doctor. It’s very scary because of all the unknowns and the lack of public understanding and support.
An interesting statistic to consider is that the amount of people effected by rare illnesses is greater then the amount of people effected by AIDS and Cancer combined. Because of the vast communities and charitable organizations created around these more mainstream illnesses they receive tons of funding for research compared to rare diseases such as Angiomas. It would be great to see our logo on a football player’s uniform but unfortunately there isn’t a marketing team at this point for something so rare.
I understand that cancer is a terrible thing and it effects many people. My grandparents died from complications with various forms of cancer and there is no way to put one deadly disease over another in terms of their tragic nature and effects on a family. With rare diseases such as Cavernous Angiomas there is no real research being done; that’s something rare illnesses need to overcome in order to give people a fighting chance at beating them.
Our goal with Project A2 is to gather more attention for Cavernous Angiomas and raise funds for research through fun events, such as our Zombie 5k we had last October. You can find Project A2 on Facebook for now, but soon we should have a really cool webpage up and running with more events and information! Thank you for reading.