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The Impact of Jewish Diseases
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…
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Postural Orthostatic Tachycardia Syndrome (POTS): An Underdiagnosed Condition That Doctors Said Was All in Her Head
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…
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After Visiting Nearly 100 Doctors, This Man Still Doesn’t Have a Diagnosis for His Rare Disease
According to a story from the Washington Post, Bob Schwartz is a walking, talking medical mystery. He lives with a strange and diverse array of difficult symptoms, and after being…
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Study Findings May Make it Easier to Diagnose POTS
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)…
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This Young Man Accurately Diagnosed His Own Disorder But Doctors Did Not Believe His Diagnosis
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…
Math Caujungco Receives Award for Mucolipidosis Type IV Discovery
Mucolipidosis Type IV Mucolipidosis Type IV (ML-IV) is a rare disease which causes a reduced mental capacity and blindness. ML-IV is caused by a missing or malfunctioning TRPMLI protein. Most patients never…
6 Times Scrubs Mentions Rare and Chronic Illnesses
As it turns out, I am obsessed with Scrubs. The TV show, not the song. When I was at my sickest to date, those TV episodes got me through a…
5 Things My Boyfriend Has Had to Get Used to Since Dating a Spoonie
As much as there is so much to talk about regarding dating while battling a chronic illness, I want to focus for a moment on what my long-term boyfriend has…
5 Tips to Make it Through the Holiday Season with Chronic Illness
I love the holidays. The lights, decorations, family time... even the smells are better! People generally seem to be jollier, even though there are a few obvious stresses that come…
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Changing Your Goals and Dreams: A Patient Story
Recording artist, published author, songwriter, musician, painter (acrylics)-- who would have thought the fun would begin after 40? I think I was born laughing. Humor has played an integral role…
5 Questions I Ask Myself at Thanksgiving with Rare Disease
Thanksgiving is a time of gratitude, family and maybe a little gluttony. It was always my favorite time of the year in high school and college. Now, while I still…
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Morgan Share her POTS Story: Part Two
This is part two of Morgan's story. Read the first half here. I was taken off of work and school for three months to monitor my condition. I had to drop…
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Morgan Share her POTS Story: Part One
This is part one of Morgan's journey with POTS. Check out the second half of her story here. Like most stories, mine begins with someone else’s. I was in sixth…
Jasmine’s Dysautonomia Story: Turquoise is my Favorite Color!
My name is Jasmine Taylor and I am 12 years old. October is one of my favorite months (July is the other one- it’s my birthday month!)… Let me tell…
Amber Shares Her POTS Journey: Part 2
This is the second part of Amber's story. Check out part one here. June rolled around, and my appointment with the rheumatologist came up. The hour-long car ride there made…
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Amber Shares her POTS Journey: Part One
Hello all! My name is Amber Aerni. I am 28 years old, and I would like to tell you the story of my POTS journey. Yes, I refer to my…
My POTS Story: Laura Taylor
Looking back over everything, it all makes sense now. I have been stuck on this never ending roller-coaster for the past 6 years and I have been pushing hard to…
Dysautonomia and Me: Rachel’s Story
I remember being 16 years old and commencing my first drug to help manage my heart rate and endless dizziness. It was strange, because I recall asking my friends if…
A Glimpse into Lauren’s Journey with POTS and IST
My name is Lauren. I’m 24 years old and I’m an ICU nurse from Texas. Last May, I was diagnosed with postural orthostatic tachycardia syndrome (POTS) and inappropriate sinus tachycardia (IST).…
Meet Hannah: a 27-Year-Old with EDS, POTS, MCAS, and Blood Cancer Fundraising for Treatment in the USA
Hannah Evans, a 27-year-old woman from South Wales with several rare diseases, has reached her £37,500 fundraising goal that will support her trip to America to access an experimental and…
How to Make October Work for Dysautonomia Awareness
October is Dysautonomia Awareness Month! Before we get into advocacy, let's touch on basic awareness... What is dysautonomia? Dysautonomia is the umbrella term that encompasses several different conditions that cause a…
Photo courtesy of Lindsay Fogarty
Raising a Son While Managing POTS, EDS, and Gastroparesis: Lindsay’s Story
My name is Lindsay Fogarty. I am a 25-year-old single mother to a wonderful 6, almost 7-year-old son, named Andrew. As I am writing this I am listening to the…
Photo courtesy of Amber Summers
POTS… My Unwanted Blessing
That title. How can blessing and POTS even coexist in the same sentence? Well, my journey started in 2000 when I began noticing strange things happening in my body: intense…
Life With Dysautonomia: Miss Amy’s Story, Part 2
TMI Alert! Pooping, or lack thereof, deserves its own book. Constipation. Hemorrhoids. Ugh! Nothing helped. Over the counter remedies, enemas, plenty of fluids, a diet high in fiber. I tried…
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Life With Dysautonomia: Miss Amy’s Story, Part 1
Hello there! My name is Amy. My friends call me Miss Amy. I’m 42 years old and I have a 21-year-old son who also shares the same diagnosis as me.…
