Preparing for an internet or power outage is crucial with angioedema

Connections are important in every aspect of life. Friends, family, social, support, and spiritual networks are crucial to our existence. However, especially in recent years, the way we stay in contact with people has changed dramatically. Much of our communication takes place via the internet — something that can be particularly beneficial for those of us dealing with chronic health issues.

Here at Bionews, the parent company of this website, we are fortunate to be a worldwide, virtual network of people living with rare diseases and advocating for greater research, funding, innovation, validation, and support. I love being part of something so monumental and impactful — a community that, only a few years ago, I never even knew I needed.

My rare disease journey began in childhood, which always made me feel different from my peers. However, I didn’t receive my first official diagnosis, Ehlers-Danlos syndrome, until I was 50 years old. I now have multiple diagnoses, but the one that currently affects me the most is hereditary angioedema. Like many others with angioedema, I have searched the internet for information, causes, and treatments. I feel very blessed to have found a tremendously supportive online community through Angioedema News!

So what happens if we lose internet access? Recently, our family realized that when data stops flowing, emotional stress can quickly become distress.

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Because my wonderful husband and caregiver, Daryl, is an internet technology security specialist, he is hyperfocused on our family’s tech safety — sometimes to a fault. A common question in our home is, “What’s wrong with the internet?” To which my husband responds, “Have you reloaded the browser, restarted the computer, or rebooted the router?” Our usual response to this question is, “Ugh!”

Recently, we experienced some issues during a simple router reset late at night that caused us to lose internet in our home for a short time. The next day, Daryl tried to tighten the security, which had the unintended effect of restricting our internet access — again. These back-to-back incidents prompted us to consider what we’d do during a prolonged internet outage, and how we might prepare for that possibility.

Those of us of a certain age who grew up with less technology seem to take this forced unplugging more in stride. When thunderstorms or other weather events cause the occasional power outage, we simply break out the candles and board games. However, for younger generations, it can be more impactful and unbearable.

At first, Daryl, our kids, and I talked about everything we felt we were missing out on without the internet. Then, the conversation shifted to preparedness. Daryl assured us there were secure backups of our digital files, while I voiced concerns about our basic needs. If we lost not only internet access, but also electricity, what would we do about food, medications, and medical equipment?

Plus, everyone in our home works remotely and is frequently online. Several of our doctor appointments are held virtually, and many of our social interactions and spiritual connections take place digitally. We even do a lot of our shopping online, including for groceries. How would we manage without power or internet?

I believe it’s imperative that we develop more in-person connections. While I’m incredibly thankful that technology has allowed us to become more connected and globally aware, it’s still important to regularly take time to interact face-to-face. Let’s get outside, make friends with our neighbors, dust off those jigsaw puzzles, rediscover a favorite hobby or pastime, and make sure to keep extra meds and supplies on hand — just in case.

Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.