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…
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…
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…
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…
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…
Society teaches us to make comparisons all of the time. When you chose to participate in a competitive game, and you want there to be a winner and a loser,…
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…
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…
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…
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).…
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…
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…
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…
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…
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 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…
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.…
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…
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,…
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…
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