Written by Matt DeGooyer, Lupus Foundation of America Lupus affects over one million Americans, with around 16,000 cases being diagnosed each year. It is an autoimmune disease that causes the…
Exercising with Ehlers-Danlos syndrome (EDS) is complicated. On one hand, you have to do it: exercise is the best treatment people with EDS have for an otherwise untreatable condition. On…
Believe it or not, it wasn’t until final exams my freshman year in college that I heard the term “stressed out.” It just wasn’t used that often back then. Nor…
We need to talk about adult rare disease patients. Adults who have a rare disease diagnosis are faced with a blaring issue-- I'm speaking for a large number of adults here,…
For those with a complicated medical diagnosis, state-funded health insurance bodes little practicality. Patients living with rare and chronic disease must schedule visits to multiple specialty clinics and physicians, especially…
Yesterday marked the beginning of season 23 of The Bachelor on ABC-- a TV show that I am told I invest in to an embarrassing degree, and yet, somehow, feel…
The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of Patient Worthy. According to a story from Vox, a review of over…
There’s an episode of “The Office” that begins when Michael Scott, the branch manager, arrives at work wearing a fake mustache, an attempt to disguise what he believes to be…
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…
According to a story from Trend News World, mother Orvelina Lizeth Melendez is heading north as part of the migrant caravan that has been making headlines as it makes its way…
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…
When you’re first diagnosed with something like breast cancer, ovarian cancer or another rare condition there’s a million things racing through your mind and a million and one things to…
According to an article from the Detroit News, the most recent budget proposal from the Trump administration would call for cuts to Medicare to the tune of $236 billion over…
This morning, I was on an elliptical before work, reflecting on the life-long journey I've been on with exercise and Ehlers-Danlos syndrome. I hated PE class as a kid. I…
The EveryLife Foundation for Rare Diseases hosted a panel discussion on Right to Try Proposals, as part of their 2018 Legislative Program for Rare Disease Week on Capitol Hill. What…
I lived with Ehlers-Danlos syndrome (EDS), a rare connective tissue disorder, my whole life and had no idea until I was 21. The symptoms were all so random, separate, and…
Much has been said about the way in which social media is affecting society today. Recently, many of the remarks have been negative. Yes, it has been used by some…
The United Network for Organ Sharing recently altered the rules of the organ transplant system. Geography is no longer as crucial a factor in securing a needed organ. Some view…
According to EurekAlert!, covering a study conducted by Oregon State University, individuals living with rare diseases are more likely to experience a poorer quality of life. They are at high…
Reported by The Washington Post, six years ago Randall Jordan-Aparo was found dead after being sprayed down with a debilitating chemical when wrongfully placed into an isolation cell. According to…
There's a great need for more depictions of rare conditions in the media, and the film "Wonder" has put rare disease in the spotlight-- especially craniofacial conditions like Crouzon syndrome.…
Four years ago, Meli Dez and Jules Morse came back from their "mom-cation" to Montreal changed. Both women were mothers of young children, and suddenly they were exposed to a…
Kelley O'Brien's hands shook as she stood in her bathroom, preparing for a date. It wasn't that she was nervous, or at least, she wasn't nervous in the way that…
Rare disease research can be daunting. It's much more difficult for rare, or orphan, diseases to find adequate funding to develop treatments than it is for diseases that have larger…
A new book was just released called “Nasty Women: Feminism, Resistance, and Revolution in Trump’s America,” a collection of essay's written by empowered women speaking out against life in Trumpland.…
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