Skip to main content

Miranda's Advice to College-Age Porphyria Sufferers

You’ve just turned 21, and you have a rare disease that forbids you from drinking. You go to parties where people pull a PBR from a bathtub or do keg stands. People are getting progressively drunker; even shy people who never talked in that English lit class you had are suddenly dancing on a table, and you are standing by, utterly confused. You’re holding a beer. You take a sip, but you don’t actually drink it. You just kind of hold the beer, hoping no one expects you to consume. Later, you give the beer to someone when there’s no more beer left in the bathtub. Someone offers you a cigarette. “I don’t smoke,” you say. Neither does that person, “just when drinking.” You begin to wonder if you’re an alien.

Don’t worry, it’s totally normal if you have porphyria!

I went to a tiny women’s college in mountains of Virginia, where there’s not a lot to do besides drink. American college life sort of stipulates that you make a lot of poor decisions, including possibly getting your stomach pumped. Obviously, I’m being facetious, but I’m also being realistic about the drinking culture, especially where it applies to college life in the United States.

But, guys, as tempting as it is to join the legions of drunk people, eating eggs at an IHOP at 2 am, and dancing on tabletops, remember that alcohol can affect some of the porphyrias, if not all of them. As someone with AIP I could die if I drank.

I’m not judging people who drink in college. A lot of times I envied them because in American culture drinking is such a coming-of-age experience, despite the fact that there’s nothing inherently mature about getting drunk. (We really have a weird relationship with alcohol in this culture!) But I am saying that it’s important to realize that many of us just cannot drink alcohol, and basically, you have to suck it up and get over it.

I could try to provide a list of things you could do as an alternative to drinking, but you know what? It would be unrealistic and ring false. Instead, you should go to the parties and dance and talk to people (I’ve been known to explain porphyria to people who are drunk) and be who you are-- pretend you are completely uninhibited, and you, too, can dance on a tabletop.

--Miranda Dennis

Comments

Popular posts from this blog

WHAT IS NEUROPATHIC PAIN?

What could it be?
Nerve Pain WHAT IS NEUROPATHIC PAIN? Neuropathic or nerve pain (NP) is a long-term or chronic pain disease that results from nerve damage. It can be caused by different diseases or conditions. Worldwide nerve pain affects as many as 26 million people. Neuropathic or nerve pain may affect larger areas of the body or it can be restricted to a smaller area, in this case it is called localized neuropathic pain (LNP). WHAT CAUSES NEUROPATHIC PAIN? Neuropathic or nerve pain may occur in the absence of an obvious visible cause (e.g. an accident, an injury, a chemical burn). There are several external situations that can directly damage nerves and lead to neuropathic pain, such as: Amputation of a limb (phantom pain, stump pain)Surgery (scar pain, post-surgery pain)Trauma or accident Neuropathic pain is also a common complication of other diseases, including nerve damage after shingles or herpes zoster infection (postherpetic neuralgia or PHN), nerve damage after HIV infectio…

GLOBAL PORPHYRIA ALLIANCE

GLOBAL PORPHYRIA ALLIANCE The APF is proud to support our members that live across the globe. Many countries around the world have developed organizations to support their local communities. We hope that enjoy the same opportunity to communicate with one another, develop friendships, and learn about porphyria. Here are links to patient advocacy groups worldwide that offer support to individuals impacted by porphyria. Argentina: Centro de investigaciones sobre porfirinas y porfirias | More informationAustralia: Porphyria Association, Inc. | More informationBrazil: Associação Brasileira de Porfiria | More informationCanada: Canadian Association for Porphyria | More informationColombia: Fundación Colombiana Para La Porfiria | More informationDenmark: Porfyriforeningen.dk (Porphyria Association Denmark)Denmark: Porfyrier.dk (Danish Porphyria Support Group)England: British Porphyria AssociationFinland: Finnish Porphyria Support Group France: Association Française des Malades Atteints de Por…

Happy Winter Season!

                  Happy Winter Season!