How One Rare Disease Research Company Has Adapted to COVID-19

For many rare disease patients, the wait for treatment and research advancements can feel like a never-ending process. This wait is made more complicated by COVID-19, which has caused barriers for both research options and people who want help managing their illness. Some research has halted during the pandemic. Cure Rare Disease is one of the many research companies learning to adapt to COVID-19. Cure Rare Disease founder and president Richard Horgan and his team are researching custom therape

I Have Vasculitis. COVID-19 Is The First Time I Have Hope.

The day after my 20th birthday, I was hospitalized with severe inflammation and my panic was rising. I was sick for over a year by that point with an illness that caused me to have anaphylaxis-like symptoms that caused my oxygen saturation level to fall. My vision also became blurry when exposed to triggers like cold or stress. A doctor diagnosed me with systemic urticarial vasculitis, an illness that I had never heard of in my life.

On Survival: My Grandma and I Are Both High-Risk | Jewish Women's Archive

For the past few years, I’ve maintained a relationship with my grandma mainly by talking on the telephone, which is a point of regret on my end, although it has been for my own health. When I was eighteen (I’m 22 now), I became extremely ill with an autoimmune disease called vasculitis, which causes my blood vessels to become inflamed. I’m still not sure why, but I get very sick when I travel. But now I regret not doing so more, even if it had triggered an autoimmune disease flare, because I don

Celebrities Are Getting Tested for COVID-19. What About the Rest of Us?

Over the past few weeks, it seems like there have been two types of stories when it comes to people trying to get tested for COVID-19, a respiratory virus that includes symptoms like fever, cough and breathing problems. The first is how celebrities like Tom Hanks, Idris Elba, players on the Utah Jazz basketball team, and Canadian Prime Minister Justin Trudeau’s wife tested positive for the coronavirus.

5 Things You Should Know About Vasculitis

Some types of rare disease impact only one part of your body. Charcot-Marie-Tooth disease, for example, specifically impacts nerves that send messages and cells to certain muscles in your body. Other illnesses, however, can impact systems throughout your entire body. For people with systemic illnesses, it is common to feel sick or in pain most of the time. Vasculitis is one of these health conditions. Vasculitis is a family of rare diseases that are characterized by the inflammation of blood ve

The Secret Order of Swiss Medical Saviors

Georges Delaloye was hiking up Mont de l’Arpille in Martigny, Switzerland, when he received a gift from heaven. “I settled at the foot of a tree and began to write,” Delaloye recalls of this most memorable moment in June of 2005. “Once this writing was completed, when I read it again, I discovered, a little stunned, that I had received the Secret.” Delaloye is a Reciter of the Secret. In the French-speaking part of Switzerland, many people call on these Faiseurs de Secret when they have an injury, sickness or other health concern. In an extremely old practice — dating back to the Middle Ages — people visit the Reciters (or more often these days, call or even text) to ask for a prayer that will relieve them of their ailment.

10 amazing disabled leaders and activists you absolutely need to follow on Twitter

While social media definitely has its drawbacks, there are definitely good things that come out of it as well. One good thing about social media, particularly Twitter, is that there are many disabled folks who use their platform to raise awareness about their experiences with being disabled. As someone with a chronic illness and has a hearing loss, it can also make me feel less isolated.

Social media influencers need to stop promoting health products

At this point, it’s safe to say that many of us have a love-hate relationship with social media. Other than the constant pressure to make it appear that our lives are better than they are to our followers, social media can have a devastating impact on mental illness, like with increasing the risk of depression and eating disorders. But, we keep going back. For chronically ill people like myself, social media can be our portal to the “outside world” if we have to be on bed rest.

An Interview with Margeaux Feldman and Lauren Fournier

Margeaux Feldman, an activist, writer, and a PhD student at the University of Toronto, and Lauren Fournier, a writer, curator, and artist, organized the conference Sick Theories, which will explore intersections between sickness and sexuality. Sick Theories will consist of workshops, panels, a keynote address, an art exhibition, and an artist roundtable. The conference will take place at the University of Toronto on November 8 and 9.

Deaf and hard of hearing journalists need support from their newsrooms

In 2016, I was covering a student council meeting at McGill University for The McGill Tribune. It was just two days after after the American presidential election. That council meeting itself was not incredibly noisy, but next door, the socialist club had a meeting on plans for resisting the Trump presidency, and they created a lot of background noise. For many journalists, this wouldn’t be a big issue. But I was born with a mild to moderate hearing loss, so I do not know what life would be like with perfect hearing. I have trouble hearing from a distance, whispers and when there is substantial background noise.