With rare diseases come common myths. Whether you have HAE, CAPS, HIDS, FMF, or any other combination of letters, you’ve probably heard an eclectic array of myths.
Here on Patient Worthy, we like to debunk glaringly obvious falsehoods. Below, we’ve listed a handful of misleading lores. We researched multiple sources to find answers to some of these myths, with the Autoinflammatory Alliance providing the most factual information to pull from.
1. You just have a virus.
Yeah, no. Family and friends may believe you “just have a virus,” because 1) they WANT to believe it or 2) let’s face it, they just don’t get it.
If hereditary angioedema (HAE) is, in fact, a virus… that is some kind of virus.
2. You can’t be sure you have [insert disease] since you haven’t experienced X, Y, and Z.
Wrong.
You don’t have to experience chronic ear infections to be diagnosed with Common Variable Immunodeficiency (CVID). According to the American Academy of Allergy Asthma and Immonology, “the severity of symptoms varies from one person with the disease to another.” So, rather than giving that person the benefit of the doubt, just fervently stare at him until he realizes his error and retreats. In our experience, this is the most successful in getting the point across.
Rather than assuming all symptoms apply to your disease, see them as potential. And the most important thing to remember is… everybody’s different. If you ever notice something off in or on your body, see your doctor.
3. You’ll outgrow it.
Eh… for the most part, NOPE. Most rare diseases are lifelong. For some people, symptoms may lessen as time goes on and the person grows older–but in other cases, new symptoms may appear or get worse over time. Of course, then you have the concept of remission, which CAN happen with certain diseases.The important thing to remember is to focus your energy on living positively and working with your doctor to manage the symptoms.
4. Symptoms are contagious.
If symptoms of rare diseases were contagious, would we be able to call the conditions “rare”? No. As much as you’d love to give that guy at work who avidly grates on your nerves one of your mouth ulcers, you can’t. They are generously gifted to you by YOUR body and YOUR immune system.
5. You must have allergies.
Antihistamines can work wonders, yes, but it’s not a miracle drug. Some rare conditions are caused by genetic mutations. Some are inherited. Some have no known cause. While maintaining a healthy diet can help give you some relief from your systems, there’s one thing we DO know for sure…if you’re trying to cure your disease by eliminating nuts from your diet, you might want to lower your expectations. Sound brutal? Well…yeah.
6. You have no treatment options.
No. No. No. No. A thousand times NO. HAE, CAPS, CVID–they all have treatment options. And we’re willing to bet $50 your doctor knows all about them. If we’re wrong, 1) find a different doctor and 2) feel free to message us about the $50; we’ll make sure to pretend we never said such a thing.
It’s only natural for people to attempt to make sense of something they don’t understand like rare diseases–which just means a little bit of education can go a long way.
