By: Christina Coates

The other day, I received a call from a person that was concerned about feeling lightheaded when ever they felt the urge to have a bowel movement. This person, like me and many others in the HOD community, got here by way of another rare brain disease. It has occurred to me that anything new or out of the ordinary seems to be associated with the malady that is in the forefront of our issues. If I stand up too fast and get more light headed than usual, it must be a bad brain day. If I get a chest pain? My HOD must be somehow related. Stomach ache? HOD, of course!

The truth of the matter is that we still have functioning bodies that just do weird things some times. I know that I forget this important fact at times. As I type this, I have an ache in my right thumb joint. All week, I had convinced myself that this must be something that my brain is doing. In reality, I am a middle aged person who has been working on a computer for my occupation for the last 28 years of my life. It is probably a strained tendon or perhaps it could be the beginning of arthritis.

When you settle into life with a rare neurological condition, with no solid common knowledge of what symptoms that disease causes, the natural jump to conclude that anything that happens must be related is not out of the ordinary. How are we supposed to know? I have double vision, nystagmus, oscillopsia, muscle spasticity, and balance problems. I am not totally confident that I can tell what caused each of these in me. Could it be the Cavernous Malformation? Or the two bleeds that the Cavernous Malformation caused? Could it be the HOD? Could it be the Depression or Anxiety? Am I seeing connections that are not really there, because our brains are wired to find connections? I don’t know. My doctors don’t know. My community doesn’t know. It is a mystery!

When all you have is a small community of folks to compare symptoms to and virtually no easily accessible information about the disease attacking your brain, it gets a bit lonely. Receiving a rare diagnosis is hard. But the diagnosis is just the beginning. I was listening to a new, up and coming podcast (The Not So Rare Podcast) this past week, and the hosts were talking about medications to treat their shared rare disease. I felt a twinge of jealousy roil through my veins. “How lucky they are”, I thought to myself. For one of my rare diseases, the only known treatment at this time is brain surgery (however, the Alliance to Cure Cavernous Malformation has been working with industry and is entering into human drug trials!). The ultra rare brain disease has no known treatments or cures. There is no medication to try. There is no surgery. This is where you come in.

This beautiful community of people deserves your support. I know that we are all asked to give and give and give. In these times of uncertainty and world wide inflation, it seems like just one more stressor in our already over burdened lives. Imagine for a moment, that you received a cancer diagnosis. Though this is completely devastating, there has been established research and funding for decades into cancer. There are hospitals and treatment centers that are devoted to ONLY treating cancer. Now imagine for me, receiving a cancer diagnosis 150 years ago. What hope do you have? This is what it is like to receive an ultra rare diagnosis. It is somehow incumbent upon the patients and families to figure out how to fund research, attract industry, and make it interesting and compelling enough to have people engage and spread awareness. Not to mention, we are also charged with dealing with our disease and figuring out our new lives. This includes having to direct our doctors on what therapies we need, what types of medications can help our symptoms, and what imaging and frequency of imaging should be. This is just another level of complication for us.

The best part of supporting and helping to UN-complicate the lives of HOD patients is that you can support in many ways, not just monetarily. You can leverage your social networks by sharing our posts. You can set up a birthday fundraiser. You can select Hypertrophic Olivary Degeneration Association as your Amazon Smile charity. You can purchase cool merchandise from the HODA Merch store on the Bonfire website (https://www.bonfire.com/store/hoda-merch-store/ ) and show it off in your community shared spaces. You can engage with our community and let them know that you see them and they are not invisible. You can sit and listen and ask questions about what we are living with. You can listen to Podcasts that we are featured on. You can read articles and pieces that we publish in various outlets. We need for you to signal boost us to help remove some of this burden from our (and our families) shoulders.

There is a very clear line of demarcation in my life. Before brain surgery and after brain surgery. Before, I was privileged enough to never even consider that there is a large sector of people in this world that can’t take a pill to make what ails them go away. That maybe a surgery to remove the offending lesion was not a possibility. After brain surgery, I am now fully aware and frankly, I am appalled that this is a very real fact for so many people. Please, do not let me get started on insurance shenanigans, including step therapy. Just another layer of complication in our lives.

My ask, or ‘Call To Action’ is clear. Even if you don’t have a hay penny to give, please share our stories and help us to advocate for our communities. Please help us to move slowly and surely towards a less complicated existence. Every signal boost is a small step forward.