It's Superbowl Sunday. A day where many people gather to eat, drink and enjoy the biggest game in professional football. It is also the biggest day for advertisement. Many companies paying millions for a prime spot during the game to air their commercials. Millions and millions of dollars for a 1-2 minute spot. Many commercials are talked about the next day. Which one they liked best, which one will be remembered and so on. Now imagine just for a moment what could be done with all that advertising money if it were to used for research for Dysautonomia and it's related conditions. The NIH would be busy for a very, very long time. How many physicians would be able to perform studies. Autonomic clinics could be opened.....unfortunately, this is just a fairy tale to those of us who struggle with a disorder that is barely spoken of and one that certainly is not at the forefront for research funding. It's a very sad reality. Throughout history there have been countless people with disorders/diseases who were sitting right where we are sitting today. Feeling hopeless. Many not able to find a doctor to properly diagnose them, let alone offer a treatment plan. It is often the patient that educates the physician about their disorder. How many physicians say "wow, this is something that we really need to understand and educate our peers about" very few. More often then not we hear 'I have never heard of this' or 'wow, this is way more then I can handle, I doubt that I will be able to help you,' the replies go on and on. How many patients will get rejected this year by a physician? How many will be told that it is an anxiety disorder? How many will say that they do not know anyone who treats Dysautonomia? How many of us will leave yet another promising physician's office only to end up at the same place that we were in prior to the office visit? It's a sad scenario that plays in my head over and over again. Many of us are not able to work, go to college, have children, attend social gatherings, brush our teeth without sitting down, eat a meal without sweating profusely or becoming nauseated shortly thereafter? How many of us just want to stay in bed all day long because we are not just physically exhausted but also emotionally and mentally exhausted? It's exhausting just thinking about this. Yes, we have hit a brick wall. We lack the ability to knock it down. So, we have to learn to go around it or climb over it. It will be a very difficult task and it will take a long time, years I am sure. Standing silent simply cannot be an option anymore. As exhausted as we are, we have to dig deep into our souls and say "I refuse this" we have to start a revolution. One thing that we can do this year is to call our newspapers and media. Let them know that we have a condition that is very rare and needs media exposure. We can contact experts that we hold in high regard and let them know that we plan on doing this. We can also ask our physicians who treat us who know very little about Dysautonomia if they would be willing to be interviewed to express the need for medical understanding of our disorders. Ask them to take part by speaking to reporters and journalists. Sure, there will be the problem of sensationalism but silence is much worse. We can make this a starting point. So many of us have FB pages, groups, websites....we can send along messages to these people and groups. Ask them to join our crusade. Small media coverage can be a venue to a larger media audience. Think about this. Our voices have to have a starting place. Let's start the planning process. I believe there is a week in April that is a National Dysautonomia Awareness week. I just need to make sure of that. I hope you will join my voice.
Peace, strength and hope to all~