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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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).…
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…
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…
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…
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…
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…
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.…
The Beginning My story began in February 2011. On January 10th, 2011, my husband and I were involved in an accident in which we slid off the side of a bridge 10 feet face…
PTEN Hamartoma Tumor Syndrome (PHTS) What is PTEN Hamartoma Tumor Syndrome (PHTS)? PTEN hamartoma tumor syndrome (PHTS) is an umbrella term referring to a spectrum of conditions that are all…
To read parts 1 and 2 of Maxine's dysautonomia journey, click here and here. It was a complete scope of my upper gastro track and everything went well with the…
Check out part 1 of Maxine's dysautonomia story here. The ambulance took me to the hospital, where they not only started an IV but also began giving me blood. I…
This is the first installment of a three part dysautonomia story. “Every woman has a moment in life that changes everything. What’s that moment for you?” I read this question…
My dysautonomia story starts around the year 2000, when I was 13 years old, though I never got a diagnosis until I was about 28! In the Fall of 2000, I…
As a 26-year-old working mother, all of life seemed in place. A rewarding job, a precious baby, and a supportive husband filled the hours and made for great memories. Days…
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