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A Rare Story Following HPS Awareness Day
You will never forget the day you are told your child has a one in a million rare disorder: the overwhelming fear of isolation, fear of what the future holds…
Learn about The Dupuytren Research Group
The Dupuytren Research Group was founded ten years ago. Our original name was Dupuytren Foundation. Our original mission was simple: to advocate for Dupuytren patients. Providing patient education, physician education, connecting patients with patients,…
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Huntington’s Disease: Choosing to Make a Difference
My name is Casey. I’m 27 years old and have a 50% chance of becoming symptomatic for a neurodegenerative disease in my 30’s (if my onset aligns with that of…
No Gene for the Human Spirit
“There Is No Gene for the Human Spirit”—from the movie Gattaca, 1997 Whether it’s distant uncles purported to be horse thieves in the early days of the…
Women with Dupuytren Disease
A traditional Dupuytren narrative is that Dupuytren is primarily a painless nuisance problem of bent fingers in old men. This perception does a disservice to many. Not only is Dupuytren common…
My Battle, My Victory: an HAE Story
Loukisha shares her journey with hereditary angioedma (HAE). Living with a rare disease you'll experience highs and lows. Unfortunately the moments of struggle are unavoidable; all you can do is…
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Pliant Announces Phase 1 Clinical Study Evaluating Anti-Fibrotic Agent PLN-74809
Pliant Therapeutics, Inc., a biotechnology company specializing in developing and commercializing treatments for fibrotic diseases, announced on January 3, 2019 through PRNewswire, that it has initiated a Phase 1 first-in-human…
A Christmas Prayer: Words from a Chronic Illness Patient
What if this Christmas season, God would appear to me and say, “Ask what I shall give thee,” as He did in a dream to King Solomon many years ago.…
PKU and Living Medicines: Spotlight Synlogic
Press releases earlier this year on biotech company, Synlogic, announced quite favorable results on both pre-clinical and clinical data on a unique application of synthetic biology for the rare disease, phenylketonuria (PKU). In just…
Meet Julie: A CIDP Warrior
My name is Julie Bell. I am someone living with CIDP, Believe or not, it’s changed my life. And today, I consider myself blessed—even despite having a rare and equally…
Desiring Independence When You Have a Rare Disease
While most of us have trouble accepting our limitations, it can be especially hard for people whose limitations are due to a rare disease. In meeting with and corresponding with…
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Thanksliving
We are entering the Thanksgiving season. I’ve been taught all my life that it shouldn’t be only a season, but an attitude year around. But how? By telling Mom thank…
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…
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…
I’m Not Sicker Than Someone Who Can’t Get an EDS Diagnosis
While I write about rare and neglected disorders all the time, very few people in my life actually know about my own experience. I have hypermobile Ehlers-Danlos syndrome (EDS), a…
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…
<a href="https://pixabay.com/users/wondermar/">wondermar</a> / Pixabay
All Things Levi: A Rare CMTX4 Patient Story
All things Levi. Such a generally fun-loving little boy, yet such a complex bundle of medical conflagrations. All blended and tied up in a robust package that makes Levi a…
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).…
Being Diagnosed in your Twenties: Thoughts and Advice from a 20-Something with CVID
Just days after my CVID diagnosis, I was invited to a support dinner. It was at this support dinner that I became aware of how unique my situation was; I…
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…
