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…
Lyme is contracted by ticks, which means nature and hiking-lovers are at a higher risk.
An Honest Interview on Living with Cystinosis, Kidney Transplants, and Cancer
Many persons living with rare disease require a transplant of certain organs. Though this is not a cure for the rare disease Cystinosis, a kidney transplant is often required once the disease…
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…
Cynthia Shares her Story on International Gaucher Day
I have Gaucher disease. I often wonder what it would be like to not have this disease. But then I stop and redirect my thoughts. I’ve spent too much time in the…
Attitude is Everything: A Story of an ADPKD Warrior
Attitude as defined in the dictionary: “A settled way of thinking or feeling about someone or something, typically one that is reflected in a person’s behavior.” In my opinion, how…
<a href="https://pixabay.com/users/wernerdetjen/">wernerdetjen</a> / Pixabay
Cows, Cud-Chewing, and Contentment: Phyllis’s Rumination Syndrome Story
Three large black and white beasts rest under a shade tree to avoid the sun’s hot rays. They appear to be chewing gum, although they are really chewing their cud.…
Living Abroad with CVID
I’m writing this article now because it was something that I needed one year ago and didn’t have. I didn’t know anyone who had moved abroad with Common Variable Immunodeficiency…
Why Snapchat’s Talent Show is Actually Pretty Unsettling
I know that it's been months since Kylie Jenner tweeted that Snapchat was over, and the company stock dropped like a billion dollars over night, but if you, like me,…
<a href="https://pixabay.com/users/PublicDomainPictures/">PublicDomainPictures</a> / Pixabay
University Researchers Investigate Why AML Can Reoccur
McMaster University researchers investigating the factors underlying patient relapse in acute myeloid leukaemia believe that they may have found a type of cell that plays an important role. The researchers…
We Need to Talk About Chronic Illness and Suicide
Content Warning: This article discusses sensitive topics of mental illness and suicide as it relates to rare and chronic illness. There's no easy way to talk about suicide. This article…
Finding Life’s Purpose With Cystinosis: Rebekah Palmer’s Story
Another article previously published under "Featured Adult: Rebekah Palmer's Story" in The Cystinosis Advocate/ Volume 10, Issue 1/ Spring and Summer 2017: I feel an obstacle in being the adult patient…
Giving Back: A Patient Story
It was a spring day in 2001. My wife Gina was asked if she wanted to go for a quick ride on our friends new motorcycle. It would change our…
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Researchers are Developing a New Model of Parkinson’s Disease
Researchers from the University of British Columbia have developed a new genetic model of Parkinson’s disease that is able to model the early changes in synaptic activity associated with the…
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…
<a href="https://pixabay.com/users/kangbch/">kangbch</a> / Pixabay
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.…
How Being a Good Patient Nearly Killed Me
I came into the hospital about four days ago at 6 am in extreme abdominal pain. I remember writhing on the emergency room bed and breathing so frantically that my…
Living with PKD: Sergio’s Story
Living with PKD has been a constant struggle for me but for you to better understand my story, I’m going to start from the beginning when I was first diagnosed.…
Please Don’t Judge Rare Disease Patients
No one likes to be judged. However, during the many years that I've been involved with rare diseases families, I've learned that some people are very quick to judge parents…
<a href="https://pixabay.com/users/jgryntysz/">jgryntysz</a> / Pixabay
Episode One of Afflicted – A New Netflix Series on Chronic Illness
This article contains a summary of the first episode of Afflicted A new series on Netflix called Afflicted explores chronic illness. It follows seven people as they talk about their…
The Family Impact of ALD
Erika Baker and her family have been dealing with the impact of adrenoleukodystrophy (ALD) for generations. The disease has impacted several of her family members, including her uncle, her cousins,…
<a href="https://pixabay.com/users/InspiredImages/">InspiredImages</a> / Pixabay
FDA Grants Orphan Drug Designation to Onspira Therapeutics’ Investigational Interleukin-1 Receptor Antagonist for the Treatment of Bronchiolitis Obliterans
According to a story from Business Wire, the biopharmaceutical company Onspira Therapeutics recently announced that its investigational therapy OSP-101 was recently granted Orphan Drug designation by the US Food and…
The Burden of PKD: A Patient Story
What is PKD and ADPKD? PKD (polycystic kidney disease) is a hereditary disease that affects about 1 in 500 persons and typically causes kidney failure in midlife. The most common…
How Getting Diagnosed With POTS Changed My Life: A Patient Story
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…
