How the Internet Helped Me Cope With My Rare Disease

Besides support, I've gained valuable treatment insights from them, too. The nature of this condition—that it’s idiopathic—means that doctors really don’t know how to treat it or what causes it.

But my fellow sufferers have taught me that I do have some control over this. I learned about natural remedies like nettle tea and quercetin, a bioflavonoid derived from fruits. I learned about foods that were high in histamine and salicylates and read the latest peer-reviewed articles about angioedema they shared. I learned about how simply hydrating could lessen the swelling and hives. How Reiki and acupuncture could help with the panic attacks that were now accompanying my bouts of throat swelling. How it was possible to manage this disease on antihistamines alone, as opposed to the heavy steroids I was taking.

But most of all, despite how little anyone knows about this disease and how seemingly rare it is—only about 1 in 1,000 have it—I learned that I am not alone.

***

It was also to these complete strangers that I confessed I had had a miscarriage only a month before I was diagnosed, and complete strangers who assured me that they had successful pregnancies despite the condition.

My husband and I had been trying to conceive for about two months, wanting to get pregnant before my 35th birthday in October. I still remember the way his face looked when I showed him the positive test. It was an unadulterated kind of joy.

My 35th came and went, and for the first time in my life, I was truly sorry that I was able to drink. Prednisone and the other drugs I was taking weren't exactly compatible with conception, and we were forced to stop trying as soon as I was diagnosed.

In my weakest moments, I wondered if the only thing worse than being incessantly asked when you’re going to have kids is when people finally stop asking.

Hey, I told my husband. Instead of creating life, look what we got instead! Let’s call her Angie. Neither of us really laughed at that.

When I asked my doctors whether my miscarriage could be responsible for the angioedema and hives, (or my cats, or gluten, or a recent trip abroad) I got the same answer from all of them: It's a waste of time trying to figure it out. A needle in a haystack.

Their plan was not to heal my body through the determination and eradication of the root cause, but to suppress the symptoms using medications, indefinitely. Of course, this is nothing new. It is the way that Western allopathic medicine has, for years, dealt with rare or difficult-to-diagnose disease.

To be fair, no two people who have idiopathic angioedema will react to medications the same way, so it is a very difficult disease to treat. It is an entirely personalized experience, and because of that, doctors are forced to rely on a one-size-fits-all-until-it-doesn't protocol for treating the symptoms. Antihistamines, H1/H2 blockers, leukotriene modifiers, and if those don't work, immunosuppressants and other hard-core drugs. For the patient, it is a constant cost-benefit analysis. Some of the meds can cause severe liver or kidney problems, and one even carries a black box warning of possible anaphylaxis upon injection.

For four months, I was on a moderate dose of the steroid prednisone along with a slew of other drugs. Don’t get me wrong—sometimes these medications are necessary. When my lips, tongue, and throat were swelling, they were most definitely life-saving. And certainly for other conditions, they are an absolute must. But how much is too much? And in my case, since the symptoms came on so suddenly, wasn't there some value in searching for the root cause?

The drugs have also had unforgiving side effects—hair loss, depression, foggy thinking, weight gain, dizziness, and sudden drops in blood pressure that have caused me to faint more than once. Still, I'll admit that I'll take those over the throat swelling any day.

Despite my doctors' best intentions, I'd realized they had little time or interest in digressing from the drug-heavy treatment plans they were trained to provide. I could feel some of their suppressed eye-rolls when I asked about natural remedies. "I don't listen to anything that isn't backed by double-blind studies and scientific data," was a sentiment I heard more than once. 

A fair statement, yes, and I’ll be among the first to champion science over practically anything. Just because something is natural doesn't mean that it is good for you. But, if the best that the latest medical thinking can offer me is a temporary reprieve from pain but possible long-term consequences that are just as bad, if not worse, than the original issue, is that really the best treatment plan?

I don't blame the doctors. I am so grateful for even getting a diagnosis so quickly. And I am unbelievably lucky to have good health insurance—or health insurance at all, for that matter. Even with it, I have spent a couple thousand dollars on care for this condition.

The fact is, like many others, I had lost touch with my own body. Or maybe I was never in touch in the first place.

Until now, I'd completely relied on doctors to tell me how all the different systems of my body work together, even the basics that I should know myself. Did you know that bad dental habits can lead to heart disease? Or that you're taller in the morning than you are in the evening? Yeah, there's the danger of over-Googling. But technology has given us an advantage when it comes to owning our health. On top of countless social media groups, there are over 40,000 health-related mobile apps, with chronic disease management apps like Crohn’s Diary, Glucose Buddy, and Cancer.net allowing patients to take the reins when it comes to how they deal with their own disease, a Brookings Institution report recently found. Tools like these and others can function as great support resources.

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Simona Supekar is a writer and an English instructor at Pasadena City College in Los Angeles.

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