Hi & Welcome to the Power of Patients.
I am going to assume that you are here because either you or someone close to you has been injured and are suffering from a traumatic brain injury. A TBI. If so, then you are at the right site. Before I explain what Power of Patients is about, let me share with you why I am doing this.
Imagine you are watching a loved one and they fall, or are in an accident, get hit playing a sport, even assaulted, there are many ways in which a traumatic brain injury can occur but what becomes confusing to us, the bystanders is that our loved one looks the same; except for maybe some slight bruising or scratches. Otherwise, everything looks “normal”. This is the exact problem. The effects of a traumatic brain injury are unseen. It’s the invisible injury.
I know from personal experience just how scary it can be to see what happens to someone you know with a TBI. I have 2 daughters; one who has had multiple concussions, with intensifying affects from them. My second daughter sustained a single blow to her left temple, leaving her forever a changed person. One daughter recovered with slight impairments and my second daughter became a stranger to us. How can two individuals, with clearly 2 different kinds of TBIs, have the same diagnosis and same recommendations for recovery? It made no sense to me.
Witnessing this was terrifying. What intensified theses that physicians couldn’t quite tell me what was happening to them. After seeing many different doctors, they did not inform us this was a possible side effect, we kept on being told to have her take it easy, it’s just a concussion, she’ll be fine, I can give you these pills. There was clearly something wrong.
That is what Power of Patients is trying to fix. As a company, we want to create a registry for people who suffer traumatic brain injuries, to track your symptoms to be able to show the clinicians what is happening to you. But in order to achieve this goal, we need your help!
Your donation will help us build a comprehensive online registry where TBI persons and their caregivers can record their symptoms, treatments and progress and we can use this information to provide the patterns of TBI recovery. Collectively these patterns can help shape TBI research, since so little is known about concussions and TBIs We will also distribute to registrants what is occurring in the clinical trial industry specific to TBI research and teach you about clinical trials.
If we can get people talking about this problem then, as a community, we can get people working on a solution, so others won’t have to guess at what is happening to their loved one and what therapy to try. Our goal is to provide comprehensive data that leads to improved traumatic brain injury recovery.