10 People Share What It’s Like to Live with an Invisible Illness

10 People Share What It’s Like to Live with an Invisible Illness

February 28th is Rare Disease Day -- a day dedicated to raising awareness for the 300 million people across the globe who live with rare diseases. Due to the rarity of many diseases, treatment options and medical representation are oftentimes neglected, making it harder for patients and their loved ones to get the treatment and attention they deserve.  On this Rare Disease Day, we're sharing the stories of several people living with rare or invisible illnesses to help shed much-needed light on the challenges faced by millions across the world. VOICES IN THE COMMUNITY  We recognize that voices within this community are often neglected, so we reached out to a few of our friends with various forms of dysautonomia to share their stories and provide tips for people who want to learn more about chronic and invisible illnesses. We are extremely grateful for their willingness to share their personal stories and insights below.  AIMEE ESTHER – A happy, productive,...
Noah McDermott - Feb 26, 2021
‘I GOT POTS AFTER CONTRACTING COVID-19 SYMPTOMS. HERE’S HOW IT’S CHANGED MY LIFE.’

‘I GOT POTS AFTER CONTRACTING COVID-19 SYMPTOMS. HERE’S HOW IT’S CHANGED MY LIFE.’

Several months after their initial infection, some COVID-19 patients continue to struggle with fatigue, trouble breathing, exercise intolerance, gastrointestinal issues and cognitive difficulties (or “brain fog”). By some estimates, as many as 5% to 15% of COVID-19 patients—termed “long haulers”—can experience these long-lasting symptoms, and around 80% of them are women. Physicians are still examining what can cause this condition, although several theories exist. One potential answer is dysautonomia, which is a medical term that represents a malfunction of the Autonomic Nervous System. Dysautonomia can be triggered by viruses as well as other medical events, such as strokes and heart attacks, and emotional traumas. In situations like this, personal stories can often help increase awareness. Recently, we spoke with Amanda, who was kind enough to share her experience with us. Below you can find our conversation, edited lightly for clarity. Can you describe your journey from COVID-19 to where you are today? In...
Bryce Chitwood - Nov 04, 2020
COULD COVID-19 CAUSE DYSAUTONOMIA?

COULD COVID-19 CAUSE DYSAUTONOMIA?

Recently the Wall Street Journal (WSJ) published an article about long-lasting COVID-19 ramifications for certain people who contracted the SARS-Cov-2 virus.  Several months after the initial infection, some COVID-19 patients continue to struggle with fatigue, trouble breathing, exercise intolerance, gastrointestinal issues and cognitive difficulties (or “brain fog”). By some estimates, as many as 5% to 15% of COVID-19 patients can experience these long-lasting symptoms, and around 80% of them are women.  “If I go outside and walk for 30 minutes it will put me down for two days,” Chelsea Alionar, a 37-year-old who has struggled with COVID-19 symptoms for more than three months, told the WSJ. “If I go to Safeway, I’m down for several days. Leaving the house is not an option.” Unfortunately, some people say they struggle with getting appropriate medical diagnosis and physicians blame their symptoms on anxiety: “They tell me that there’s really no way that I could...
Bryce Chitwood - Sep 23, 2020
6 SALTY SNACKS YOU CAN SAFELY STOCK UP ON

6 SALTY SNACKS YOU CAN SAFELY STOCK UP ON

Going out these days can be trickier, adding an extra layer of complexity to the daily lives of people living with chronic conditions like dysautonomia or Ehlers-Danlos Syndrome (EDS). Many have started buying food and essential items in bulk as a way to reduce the need to head outdoors. While the recent uncertainty is unsettling, there is one silver lining: Often, the foods preferred by people living with conditions like dysautonomia are very high in salt, due to sodium’s ability to help ease symptoms in some patients. As a preservative, salt helps food last a long time, meaning popular “spoonie” treats like potato chips and broth are exactly the kinds of foods someone can safely stock up on.  If you feel up to braving the supermarket, here are some of the best foods you can buy in bulk to help ensure you’re still getting in the salt.  POTATO CHIPS Whether it’s...
Bryce Chitwood - Mar 24, 2020
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