Imagine the sun’s scalding rays beating down on your back. As you will your legs to continue moving, every step threatens to betray you. Rivers of sweat streak your skin, stinging your eyes. As the blinding daylight obscures your vision, your heart hammers in futility. Your body weakens, and you question your resolve to continue. […]
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CrowdMed Blog Topic: Rare disease
Here are all CrowdMed Blog posts on the topic of Rare disease. Roughly one in ten people suffer from a rare, difficult-to-diagnose medical condition which recent reports show could take an average of 10 years to diagnose. If you or someone you know is going through this struggle right now, we might have the information and resources to help.
As many rare disease sufferers know, sometimes the key symptom that leads to a diagnosis may be mundane or bizarre. Whether you are healthy or chronically ill, daily life is full of other concerns to distract you from the seemingly harmless quirks of your body. Many of these strange ailments are completely benign or explained […]
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Rare diseases affect more people than AIDS and cancer combined. And yet, they are rarely discussed on national media or given the funding they deserve. See our infographic for more details.
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What is Lupus, how does it get diagnosed, and what do we do once we’ve found out we have it? Deanna Brownlee answers all these questions and more.
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Last month the world recognized Rare Disease Day on February 28th. There are medical conditions that are not rare at all, but still fall into the abysmal cracks in our healthcare system. Some might call these orphan conditions. I live with one of these conditions – postural orthostatic tachycardia syndrome (POTS). POTS is fairly common, […]
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Note: this will be the first in a three-part series about addressing the new world of knowledge about genetic disorders. This first post will be about assessing the chances that we may be at risk for a genetic disease. Future posts will address what we can do with this knowledge. We live in a relatively new era […]
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5 stories of those who overcame their diseases as well as society’s judgments to inspire the people around them, and also change the world in the process.
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