It has been hard for me to share my story about cerebral cavernous malformation (CCM). It’s not me who is directly affected so, do I have a story? I love someone who is affected, so of course I have a story. But then, I think about how little I know and understand about it and I feel like I can't share my story because I just don’t know enough.
And then I realized, the lack of information combined with the love of another person: that’s my story.
My Dad would likely not label himself a “survivor;” but I do. Of relevance to this story is that he has had multiple life altering health related events over the past decade and he walked away from those events as a person making changes and trying new things. All in the name of life.
But then…something happened.
Something…but what? His experience of what happened is, of course, different than mine. The something I experienced was information from my Dad: “My doctor told me I’ve got extra blood vessels in my brain. It probably doesn’t mean anything but it’s something good to know.” I was perplexed.
Then…something more. I’d ask about things from my childhood and my Dad would defer to my Mom for the answers. I began to feel like my Dad was being lazy; as if pulling up those memories was too much of a bother. I was hurt.
Then…even more somethings. A suspected seizure while driving resulting in a minor accident; dizziness; confusion; neuropathy (weakness and numbness in the limbs); and the walking. He wasn’t walking for his health anymore; sometimes because it wasn’t safe, sometimes because it wasn’t possible. But walking?! The walking was instrumental to his health over this past decade. I was scared.
I am scared.
CCM is considered a rare brain disorder; though it is estimated that 1 in 500 people are affected but do not experience symptoms. Sometimes a person learns they are affected because of an incident (a “something”) that necessitates an MRI; sometimes people learn about it because they needed an MRI for another reason; and some people know it is in their family history, so they learn about it and look out for it.
Symptoms vary widely: neurological deficits such as memory and balance issues; headaches, seizure, and many more.
Most patients are forced to teach their doctors about this disease; they/we don’t have the luxury of precedent and pattern. Some doctors want to learn; some doctors do not.
The only treatment is brain surgery; candidacy and success rates vary.
Informed, experienced, and quality healthcare is of paramount importance and is incredibly hard to come by. There are only a handful of certified centers of excellence in the US and many insurance plans do not apply.
In sharing my story, I hope you will learn more about CCM (angioma.org); I hope you will ask about it; and I hope you will talk about it with others.
Mostly, I hope you will find a way to show your support by making a donation to help support research and treatment and/or joining me and " Team Pop Pop" on our awareness walk at 9am Saturday September 22 at Bear Creek Lake Park.
Your support is truly needed and deeply appreciated. We all deserve to be survivors.