Not Every Disease Is Visible
We often talk about the importance of medical ID bracelets for people with medical conditions of which first responders must be made aware, if the person requiring medical care is unable to communicate his or her specific needs. As we outlined previously, there are common reasons why having a medical ID bracelet is critical – and a few reasons why some people, even in those situations which might be considered “normal,” should consider wearing one. There are some conditions, however, rare enough that wearing a medical ID bracelet is the only reasonable response.
Not every disease is visible. Understandably, some diseases, such as diabetes and Alzheimer’s, are often not evident when simply looking at someone – especially if that person is unconscious. There are other conditions, as well, for which there are no obvious, perceptible symptoms, even for trained medical professionals – and often not even through extensive, general testing. It is important to understand a few basic things about rare diseases, in order to understand what patients with these atypical diseases face when needing medical care:
Rare diseases are defined as those that impact less than 200,000 people. Even counting the United States population alone, that would mean less than 0.01 percent of the population would have any rare disease.
The average person with a rare disease visits over seven different doctors, including multiple specialists, before their disease is properly diagnosed. Prior to that accurate diagnosis, many people are misdiagnosed – and this happens for some people multiple times.
The average time required to correctly diagnose a rare disease is nearly five years. During that time period, most people receive inaccurate treatment for a different condition, sometimes for multiple different conditions.
Time spent treating misdiagnosed conditions decreases heath significantly and often makes appropriate treatment much more difficult when the actual disease is identified.
Nearly one in five physicians feel unqualified to help diagnose a rare disease, so they naturally spend extensive time looking for a common disease that fits the major symptoms exhibited by rare diseases. (Occam’s razor says that the best answer usually is the easiest answer, which explains a physician’s hesitancy to believe someone has a rare disease until all other possibilities are exhausted.)
40 percent of specialists rated their training about rare diseases neutral or worse.
When we consider people with rare diseases in the same way we look at the most common reasons that people wear medical ID bracelets, a pattern emerges that is especially critical for people with rare diseases:
Medical professionals cannot treat something about which they are unaware.
Medical professionals are most likely to consider a condition about which they are aware, familiar, and comfortable diagnosing.
Medical professionals are less likely to consider a condition about which they are unaware, unfamiliar, or uncomfortable diagnosing.
People with rare medical conditions are less likely to receive the proper care if they are unable to communicate symptoms characteristic of their diseases.
People with rare medical conditions who cannot communicate verbally have a simple solution to avoid continued misdiagnosis and to receive the care they need: wearing a medical ID bracelet.
This might seem obvious when presented in such a straightforward manner, but too many people with rare diseases fail to stop and consider the implications. If you have a rare disease, get a medical ID bracelet. If you know someone with a rare disease, stress to them the importance of wearing a medical ID bracelet. The choice to do so should not be a source of questioning or debate. It simply needs to happen for those people with rare diseases, more than any other patient demographic we could mention.
Don’t hesitate. Just do it. Return to Sender will ensure that your bracelet is one that will be flattering – a beautiful piece of jewelry that you will be proud to wear. But you need to take the first step. You have gone through enough already to obtain the correct diagnosis for your condition. Avoid risking further misdiagnosis if you are unconscious and need medical care. Let us help take that concern off your shoulders and put the solution on your wrist.