Category: Rare Disease

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. By contrast, CrowdMed’s crowdsourcing and prediction market approach to medical diagnosis helps more than 70% of patients whose doctors had no answers, to finally get answers – and usually in less than 2 months.

Johanna Cider 21-07-2019, 10:36 Being Undiagnosed, Rare Disease, Wellness Tips

6 Simple Ways to Support Someone Dealing With a Health Crisis

When someone you care about receives a serious health diagnosis, it is important to let them know you are there to support them. It is frightening and a huge change in your loved one’s life. It is important to keep in mind that there are many ways to provide support to your loved one. So, […]

Deanna Brownlee 02-03-2016, 13:47 News, Rare Disease, Uncategorized

But You Don’t Look Sick? Here’s Why.

“But you don’t look sick!” Chronically ill patients hear this phrase again and again from friends, family, and colleagues alike. People assume they’re making a valid argument, when it is nothing more than a biting attempt to invalidate your illness and discredit your suffering. Rooted in ignorance, it does nothing but create resentment.

CrowdMed 01-03-2016, 13:48 Being Undiagnosed, Patient Stories, Rare Disease, Uncategorized

Please Note, You Are Not Alone

When you are suffering from a rare disease, It is easy to feel isolated. The symptoms you are experiencing are not always recognizable by loved ones or doctors and with that, can sometimes go unacknowledged. Patient “Barry” was a classic example of this. “Barry” came to us after suffering for 30 years with chronic urinary […]

Deanna Brownlee 05-01-2016, 10:20 Rare Disease

Diagnosis Spotlight: Vascular Ehlers-Danlos Syndrome

Diagnosis Spotlight: Vascular Ehlers-Danlos Syndrome February of 1996 was the beginning of the end for David Bowen and his family. When the 13-year-old began experiencing abdominal pain and vomiting, his mother Cathy drove him to the hospital. There, doctors diagnosed him with a perforation of the sigmoid colon with peritonitis. The surgeon performed a colostomy […]

Deanna Brownlee 26-10-2015, 16:35 Rare Disease

Diagnosis Spotlight: Lipedema

Diagnosis Spotlight: Lipedema Imagine living with a disease that no one understands. Instructors do not teach it in medical school, and less than three percent of physicians are aware of it. It mimics obesity in the arms and legs, but creates pain, fatigue, easy bruising, swelling, and inflammation. It only gets worse over time, leading […]

Deanna Brownlee 15-09-2015, 13:51 Being Undiagnosed, Rare Disease, Uncategorized

Discussing Your Undiagnosed Illness: How Your Loved Ones Can be Loving, Helpful, and Supportive

Living with an undiagnosed disease is immensely difficult. It is an endless journey of hopelessness, confusion, questioning, abandonment, and destitution. It is physically, emotionally, and financially draining. In a living death that drags on for years, all you can do is watch your life spiral out of control. Your body is failing you, and your […]

Dan Derbes 17-02-2015, 14:43 Medical Detective Posts, Rare Disease empowerment, genetic disease, Rare conditions, rare disease

Are You At Risk For A Genetic Disorder?

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 […]

Rachel Vassar 10-02-2015, 15:23 Medical Detective Posts, Rare Disease Celiac Disease, diets, gluten, trends

Are Gluten-Free Diets Good For Us?

From Celiac disease sufferers to the rest of us, has the gluten-free diet craze delivered on its promises?

CrowdMed 19-01-2015, 14:12 Rare Disease inspiration, rare disease, undiagnosed

5 People With Rare Diseases Who Will Inspire You

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.

CrowdMed 04-09-2014, 08:04 Being Undiagnosed, Medical Detective Posts, Patient Stories, Rare Disease patients, press, testimonial, undiagnosed

For 10 Years No One Believed She was Sick

We are humbled and honored to share the story of Deanna, one of our patients, who yesterday published an article on Examiner.com about her experience with our system. As you will see, she had a fantastic experience. Most importantly, she also shares her own journey to arriving at a diagnosis. Like most of our users, […]