Navigating a New Life with “The Trifecta” – POTS/MCAS/EDS
My name is Sarah. I am a solo mother to a beautiful five-year-old named Ensley! I’m not quite sure where to begin, but my world abruptly changed post-COVID-infection: January 7th…
My name is Sarah. I am a solo mother to a beautiful five-year-old named Ensley! I’m not quite sure where to begin, but my world abruptly changed post-COVID-infection: January 7th…
For those of us who suffer from depression, that mostly invisible mental illness that, at its worst, can render us incapable of getting out of bed and, at its best,…
There are at least 15 different types of dysautonomia, conditions characterized by autonomic nervous system malfunction. Normally, the autonomic nervous system plays a role in digestion, temperature control, blood pressure…
When asked about the key way that the medical field can better serve patients, Pari Schroeder doesn’t waver: multidisciplinary care. She acknowledges that the medical system can often be very…
For those of us who suffer from depression, that mostly invisible mental illness that, at its worst, can render us incapable of getting out of bed and, at its best,…
Are you ready for the October 2022 Dysautonomia Challenge? You can make this October stand out on your calendar by making each day meaningful, event ladened, exciting, and dedicated…
Have you ever wanted to just take a break from addressing your illness? Like, taking those medical binders and folders and just keeping them in your car trunk for a…
For those of us who suffer from depression, that mostly invisible mental illness that, at its worst, can render us incapable of getting out of bed and, at its best,…
“The patient network is incredibly important,” Lina Williamson, PhD, explained to me. You see, in her childhood, Lina experienced a number of seemingly unexplainable symptoms: severe and sometimes debilitating leg…
Since 2012, the nonprofit organization Dysautonomia International has organized Dysautonomia Awareness Month. With the goal of spreading awareness of the condition in the medical community and among the general population,…
Anybody who knows me knows that Jeopardy! is one of my favorite shows (Rest In Peace, Alex Trebek). Of course, that doesn't mean that the show never messes up or makes…
by Lauren Taylor from In The Cloud Copy Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complicated and debilitating condition in which affected individuals are unable to perform their daily activities…
If you are like me and have complete inability to regulate temperature, then you might be looking for some awesome accessories to make life a little less painful this winter…
For those of us who suffer from depression, that mostly invisible mental illness that, at its worst, can render us incapable of getting out of bed and, at its best,…
The road to diagnosis for a rare disease patient is often a long one. Countless doctors, appointments, and tests are typically needed to finally discover the cause behind one's symptoms.…
Since 2012, the nonprofit organization Dysautonomia International has organized Dysautonomia Awareness Month. With the goal of spreading awareness of the condition in the medical community and among the general population,…
When Jacqueline City went to a concert in high school, she didn't know that her life was about to change forever. At the time, Jacqueline was 18 and living in…
By Danielle Bradshaw from In The Cloud Copy For the past five years, it has become more and more apparent that some people have a greater predisposition to suffer from…
In a story written for The Washington Post, Jessica Slice writes about a frightful predicament for patients with chronic illnesses that cause disability. Jessica lives with dysautonomia and hypermobile Ehlers-Danlos…
I've been hearing people buzz about compression socks/stockings for a while, but I've never invested in a pair myself. They're basically what they sound like-- socks or stockings that... compress.…
Gina, a 14-year-old Jewish girl, had familial dysautonomia when she passed away. She was described as a having a 'positive and upbeat attitude' and enjoyed spending time with her older…
About one to three million people in the United States are living with postural orthostatic tachycardia syndrome (POTS). The disease affects one in one hundred teens and is more common…
Not just anyone can cure their own illness. Understanding how to cure a rare disease is complex, as these illnesses often have unique and poorly understood characteristics. Treatment and diagnosis…
According to a story from UToledo News, a recent study conducted as the school's College of Medicine and Life Sciences may make it easier for postural orthostatic tachycardia syndrome (POTS)…
Doug Lindsay ran track in high school. According to an article published by CNN Health, Doug had big plans as a senior at Rockhurst University in Kansas City where he…