6 Things Every Parent Should Know About SUDEP

Originally published on The Mighty

Disney Channel star Cameron Boyce died in July at age 20, with an autopsy confirming the cause was sudden unexplained death in epilepsy (SUDEP). Epilepsy is not considered a terminal illness or even a condition that frequently causes death. But in rare cases, it can lead to death.

Naturally, for any person with epilepsy or their parents, news like this is incredibly scary. However, it’s important to remember that SUDEP is rare and education is power. The more you know about SUDEP, the better you can protect your kids (and yourself, if you have epilepsy) against risk factors.

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Americans With Diabetes Take a ‘Caravan to Canada’ for Cheaper Insulin

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Originally published on The Mighty

In the United States, people with type 1 diabetes spend an average of $5,705 per year on insulin alone. In Canada, people with type 1 diabetes pay an average of $1,500 CDN (about $1,140 USD) per year for all their diabetes supplies, including medication. So last weekend, a group of Americans went on a “Caravan to Canada” to not only buy insulin for a fraction of what they would pay at home, but also to raise awareness of the price gouging Americans face for the exact same medication.

The group was organized by the Minnesota state chapter of Insulin4All, an advocacy group under the diabetes nonprofit organization T1International. The “caravan” traveled by private bus, starting off in Minneapolis, Minnesota, on Friday and arriving in London, Ontario, the next day after picking up other caravaners along the way.

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Why We Need to Include Chronic Pain in Suicide Prevention

Originally published on The Mighty

When we talk about suicide, we usually talk about it in terms of mental health and mental illnesses. She was depressed. He was “struggling.” She had mental illness for years.

When we talk about chronic pain, especially in light of the opioid crisis, we often focus on the clinical, the diagnoses. The “risks.” Her doctor should never have written that prescription. Opioids are “no good.” Why couldn’t she just take ibuprofen?

What we need to do is start talking about the intersection between suicide, mental health and chronic pain. We need to stop believing chronic pain is just something you “suck up and deal with” and that suicide is just a matter of someone being “sad” and “not strong enough.” We need to talk about the very real fact that chronic pain is a unique factor that can lead to suicide — and the fact that we’re not doing enough to stop it. Leaving people with chronic pain out of the suicide prevention discussion can be, quite literally, deadly.

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New JAMA Study Says Opioids Don’t Work Very Well for Chronic Pain. Now What?

Originally published on The Mighty

A study of 96 clinical trials came to the conclusion that opioids aren’t very effective for chronic non-cancer pain. The study was published yesterday in the Journal of the American Medical Association (JAMA) and quickly got the attention of news media, reported on with headlines like “Opioids offer little chronic pain benefit and wane over time” (CNN) and “Opioids don’t work well for chronic pain and are overused, study finds” (NBC News).

If I didn’t know much about chronic pain, I’d say wow — it sounds like a great way to solve the opioid crisis would be to just stop prescribing opioids for chronic pain. Indeed, these types of studies are typically used to justify limiting opioid prescribing for chronic pain. But the study is missing the deeper story and challenges behind chronic pain and opioids, and risks making it even harder for people to get relief from their pain.

Here are four things to remember in light of the new JAMA opioid study.

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What Doctors Should Learn From the Teen Who Died After Ear Infection Misdiagnosis

Originally published on The Mighty

There’s a saying in medicine that “when you hear hoofbeats, think horses, not zebras.” It means when you’re trying to figure out a patient’s diagnosis, think of common illnesses first, rather than conditions that are more rare and theoretically less likely to be the diagnosis. It’s a theory that can work in guiding doctors to the correct diagnosis — but it’s far from foolproof. And when it fails, the results can be deadly, leaving people with chronic illnesses vulnerable to dangerous medical care.

The story of Rosie Umney, a 15-year-old with type 1 diabetes who died of diabetic ketoacidosis hours after a doctor diagnosed her with an ear infection, should serve as a cautionary tale to any medical professional looking out for “horses” but not “zebras.”

As reported by Kent Live on Wednesday, Umney began feeling sick on July 2, 2018. She went home early from school, and her mother and grandfather took her to an urgent care after she complained of abdominal pain, reflux and was hyperventilating. Umney’s mother and grandfather told the doctor, Sadaf Mangi, they had checked her blood glucose and the results were normal. Mangi diagnosed her with an ear infection and sent her home with a prescription for medication.

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If You Want to Support a Sick Friend, Let Bradley Cooper Show You How It’s Done

Originally published on The Mighty

After hearing that a friend has been diagnosed with cancer or another illness, most people’s knee-jerk response is, “Let me know if you need anything!” However, they may not follow up or know how they can actually support their friend. Ken Jeong revealed Thursday the sweet way his friend and costar Bradley Cooper assisted his family while his wife underwent chemotherapy for breast cancer, providing a great example of what true support looks like.

Jeong’s wife, Tran, was diagnosed with breast cancer in 2008, after the birth of their twin daughters. Jeong was filming “The Hangover” in Las Vegas while she underwent chemotherapy in Los Angeles.

Jeong told Entertainment Tonight that Cooper drove him from Las Vegas to Los Angeles for the holidays, and then invited the Jeongs to his house since Tran wasn’t strong enough to travel anywhere.

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10 Surprising Truths About Alzheimer’s Disease

Originally published on The Mighty

Alzheimer’s disease tends to be well-known for its distinguishing symptom: memory loss. But there’s so much more to the condition that people may not realize until they or their loved one is faced with it. No two people with Alzheimer’s disease are exactly alike, and by better understanding the various symptoms and challenges they go through, loved ones can provide even better support and care.

We partnered with the Alzheimer’s Prevention Initiative, led by Banner Alzheimer’s Institute, to ask our communities what they were most surprised to learn about Alzheimer’s after they or a loved one was diagnosed. Hopefully this information can help you in your own Alzheimer’s experience. What surprised you about Alzheimer’s disease? Share in the comments to help demystify this disease for others.

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This Woman’s ‘Horrible’ Airport Experience May Sound Familiar If You Have an Invisible Disability

Originally published on The Mighty

If you live with an illness or disability that doesn’t look the way others expect a disability to look, you know how common it is for people to accuse you of “not really being ill” or “faking it.” Sometimes these accusations can even lead to people refusing to provide you with disability services and assistance — something one airline passenger is fighting, after airport employees dismissed her invisible disability.

Nathalie Allport-Grantham, a 23-year-old from the U.K., told The Mighty she’s pursuing a formal complaint against London Stansted Airport after employees denied her assistance because she didn’t “look disabled.” Allport-Grantham has Ehlers-Danlos syndrome (EDS), Marfan syndrome and postural orthostatic tachycardia syndrome (POTS).

She bought a ticket on a Ryanair flight from Stansted to Nice, France and requested wheelchair assistance at the time of purchase. When she and her boyfriend arrived at the airport on December 31, she was given a wheelchair and her boyfriend was asked to wheel her to the gate (this is standard practice at Stansted).

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Woman’s Story About How a Burger King Employee Helped Her Diabetes Goes Viral

Originally published on The Mighty

Having a health emergency while you’re alone in public can be terrifying, especially if you have an invisible illness. Strangers around you may not realize you’re in trouble or they may not believe you when you say need help. Now, one woman’s act of kindness for a chronically ill customer is going viral, showing others what should be a common response to a stranger experiencing a medical crisis.

Rebecca Boening shared a photo of Burger King employee Tina Hardy with a caption explaining how she stopped at the restaurant’s drive-thru in Amarillo, Texas, after her blood sugar dropped to a dangerous level. She “stumbled through” placing her order and explained that she has diabetes and needed food. Boening was shocked when Hardy ran out of the restaurant and up to her car with a serving of ice cream as she sat in her car at the first window.

“Tina later explained that her husband was also diabetic and she could tell that I needed help,” Boening wrote.

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What ‘This Is Us’ Misses About Chronic Pain and Opioids

Originally published on The Mighty

The opioid crisis has found its way into the Pearson family.

The second season of the hit NBC tearjerker “This Is Us” began earlier this fall with Kevin Pearson (Justin Hartley) getting the big break most actors dream of: a part in a movie opposite Sylvester Stallone. But after injuring his knee while filming an action sequence, Kevin turns to opioids to kill the pain — both physically and, as it quickly becomes clear, emotionally as well.

In the last few episodes, we’ve seen him washing down pills with alcohol, frantically calling every doctor he’s ever had asking for a refill on his prescription, forging a prescription for fentanyl, dealing with withdrawal symptoms and sabotaging his relationships. “Kevin, you’re spiraling,” Kevin’s ex-wife Sophie says worriedly.

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