We can fund the cure

Here's my story if you haven't heard it before:

On February 20th, I went to the Emergency Room because I was experiencing a headache with double vision and slurred speech. After an MRI, it was found that I have two Cavernous Malformations in my pons (an area of the brainstem).

Some fast facts about Cavernous Malformations: Cavernous malformations are also known as cavernous angioma, CCM, and cavernoma. They are made of an abnormal cluster of capillaries. They are not cancerous. The thin vessel walls can be leaky, allowing blood into the surrounding brain or spinal cord tissue. It is believed that about one in every 500 people has a cavernous malformation, but most people never have symptoms.

Unfortunately, one of my Cavernomas had hemorrhaged (i.e. I had a brain bleed) I spent a couple of nights in the ICU and was transferred to Mayo in Rochester to get incredible care. (Mayo Clinic is a Center of Excellence for Canvernous Malformations.) They told me that there is a 30-50% chance of a rebleed in the next 2 years, and if that happens I would likely need risky brain surgery to remove it. It’s a disturbing possibility to live with, but I am taking each day one step at a time.

It was overall an extremely scary experience, but I am making great strides with my recovery. As of now, I am working part-time and doing Occupational Therapy for my eyes and coordination. But from the outside I appear to be back to “normal”! Steve has been my rock, and my family (immediate and in-laws), friends, and co-workers have been so supportive. Despite the circumstances, I feel very lucky.

Throughout this whole journey, it has struck me how little the medical community knows about Cavernomas. It is common to have a cavernoma, but fairly uncommon to have symptoms from it (especially a hemorrhage). If I hadn’t gotten an MRI at the ER, they would have sent me home with a migraine diagnosis and orders to drink fluids.

The Alliance to Cure Cavernous Malformation does such great work spreading the word about this disease, providing avenues for support, and advocating for research. If you are interested in learning more about Cavernous Malformations and/or the Alliance to Cure, check it out here:

https://www.alliancetocure.org/ (https://www.alliancetocure.org/)

Thank you for any support you can provide! Hopefully one day we will have a cure that doesn’t involve invasive surgery!