How the Internet Helped Me Cope With My Rare Disease

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.

When I came to grips with the idea that the short term relief I was getting from the medications might cause long-term damage, especially to my liver, I became desperate to get off of them. I'd tried in the past, but each time I dropped the dosage on my medications, my symptoms would worsen.

By learning from the mistakes of other angioedema sufferers online and understanding how prednisone affects the adrenal glands, I was able to wean myself off of the steroid completely. Prednisone takes the place of cortisol, a naturally occurring hormone in the adrenal glands. When a person uses this type of steroid, the adrenal glands create less of their own, and so the body eventually requires the steroid to continue working, which is why reducing dosage, even incrementally, can have side effects. I'd read that others were able to wean by dropping the dosage by 1 milligram each week, and that they'd increased the amount of other meds, like Doxepin, to help them. With the agreement of my doctor, this is what I did.

I also tried "oil pulling", an Ayurvedic cleansing ritual, received weekly acupuncture treatments to help with my anxiety attacks, and took probiotics daily. I'm not sure if it was the alternative treatments, the medication, or a combination—or if the condition simply eased up on its own—but after ten weeks, I was able to get off the Prednisone. A few weeks later, I weaned myself off of Doxepin too. I'm not cured, but I'm better. Now I only take steroids in emergencies, on top of one daily Allegra and one Zantac—yes, Zantac. Who knew that there were histamine receptors in your stomach, too?

I hadn't realized how intricate our bodies are until the angioedema. The reason my eyes become bloodshot right before I have a facial swell: tiny blood vessels in my eyes were swelling as an immune response. Amazing, how it all works.

I hate the cold, detached analogy that the body is a machine. Our bodies are simply what they are: they are us.

Now, I have enough confidence to be my own healthcare advocate and weigh my options before immediately taking a drug that a doctor prescribes. I can talk knowledgeably about different drugs, ask my doctor questions, and incorporate non-Western modalities where appropriate.

I'm not by any means advocating that people forsake their doctors in favor of Google. But today's technology offers people with rare diseases the ability to take ownership over their health and to seek support rather than dwell in sickness alone. Ownership, in my case, meant a combination of guidance from my doctors and the knowledge I'd gained from people, websites, and online forums.

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

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