What if on the surface you appeared by all signs to be healthy? But internally your body was screaming after a TBI, an often invisible injury?
Imagine your brain, the most delicate organ in your body, suffers severe damage in a fall, vehicle collision, or some other violent trauma. You’ve just undergone a traumatic brain injury (TBI). Outwardly you can seem fine; no marking, bruising, or scarring is left behind. Inside your skull though, your brain may never be the same again. You experience recurring symptoms such as headaches, brain fog, vision problems, balance issues, mood swings, and trouble sleeping. The symptoms follow you, wearing you down and taking a toll on you and your loved ones. You may have difficulty with work or be unable to resume work. Everyday activities may now be a challenge and your relationships are strained both by your symptoms and other’s expectations of your recovery. You want the suffering to stop but you don’t know where to begin to fix this internal problem. Many people in your life, including your doctor, do not fully understand your symptoms. Or even worse, they don’t believe that your injury is real, ongoing or permanent.
An Invisible Injury
In 80% of cases where a person suffers a TBI – the damage is an invisible injury. In the aftermath, there are often no stitches, no crutches, no casts and on the surface it can look like nothing has changed. Society more readily accepts injury when it leaves behind visible evidence, the lack of such evidence in the case of many TBIs causes others to doubt the severity of the problems. The people around someone who has suffered a TBI will often become frustrated with the victim’s seeming inability to “return to normal”.
The problem is exacerbated in that brain injuries can often be missed as a medical diagnosis, compounded by the lack of current understanding of how to treat brain injuries even if they are properly diagnosed. All these factors create a tough and difficult uphill road for those in recovery.
3 Reasons Why TBIs are Missed:
- There is no definitive test to diagnosis a TBI and no standard of care
- Little clinical trial research exists that fully characterizes traumatic brain injuries
- No single patient-centric data system exists allowing a patient or caregiver to actively involve themselves in their recovery.
We Need to Change the Way TBIs are Treated
Power of Patients’ mission is to help traumatic brain injury people and caregivers (TBI-PC)™. Our digital health platform allows users to tell their story, track their symptoms, their triggers and provide education about clinical trials. Our app is a customizable digital health platform designed so you can show your doctors what is happening to you and when. We want to make the invisible symptoms visible and empower patients to be heard so they can take charge of their TBI care.
If you or someone you know is suffering from a TBI know that you are not alone. Even though your symptoms may in many ways be invisible, we recognize that your symptoms are real and can have profound, far-reaching impacts on your life. Please know that Power of Patients free, symptom tracking Dashboard is a resource that is available to you as you navigate your TBI recovery, along with TBI support resources and information on upcoming clinical trials.
Author: Meaghan Murphy