At CrowdMed, we pride ourselves on harnessing “The Wisdom of the Crowd” to solve complex medical cases and are therefore, only as effective as the talent of our Medical Detectives. To celebrate all those who contribute their time, effort and exceptional knowledge, we’d like to kick off the Medical Detective Spotlight series, which will profile one of our Medical Detectives each month. To kick-off the series, we’d like to introduce one of our exceptional Medical Detectives, Kwalk21.
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 (Bowen, n.d.).
Eight days later, an intern began taking the staples out. But “the skin started spreading apart in the middle and bleeding like a fresh wound” (Bowen, n.d.). Cathy voiced her concerns, but the surgeon didn’t listen. It took David almost a month to recover, but no one knew why.
I’m pleased to officially announce a partnership between CrowdMed and a leading global biotech focused on rare diseases and specialty conditions, Shire, who will soon be piloting access to our platform to its thousands of US employees and covered dependents.
This marks the first time that a major self-insured employer has elected to offer CrowdMed as a company-paid benefit to its employees, but it will surely not be the last. Over the past couple of years, CrowdMed has resolved over 1,200 real-world medical mysteries for patients around the world, with a greater than 60% success rate, which is why innovative employers like Shire embrace our unique medical crowdsourcing technology. CrowdMed can not only change the lives of Shire employees who are desperately seeking answers for undiagnosed, misdiagnosed, or under-diagnosed medical conditions, but also dramatically reduce their medical costs by resolving these complex cases quickly and efficiently.
We are delighted to announce a partnership and API integration with drchrono, an electronic medical records platform focusing on iPad, iPhone, Apple Watch, and web. By combining our technologies, we are making crowdsourced medical suggestions easily accessible to doctors and patients across the US.
Thanks to our new API integration with drchrono, our technology is now easily accessible to any physician or patient using the drchrono platform. This means that drchrono physicians can now refer patients to CrowdMed with the click of a button, and participate as Medical Detectives on our site using their drchrono login, earning points and cash rewards while expanding their medical knowledge, and helping patients around the world in desperate need of answers.
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 to permanent damage. Treatment is complicated, too. Many doctors do not offer it, and insurance companies often do not cover it. While lipedema can be a daunting condition, the experience is slowly getting easier.
Dr. David Amron, MD and his patient, Crystal Blount. Dr. Amron, a dermatologic surgeon, is “the leading lipedema treatment specialist” who “has established the most effective treatment for lipedema known today” (Amron MD, 2015). Blount, his patient, is a passionate advocate for others like herself with the disease. Together, they are fighting the stigmas of lipedema.
It’s not everyday we get to listen to a CrowdMed patient success story, via podcast, moderated by a CrowdMed Medical Detective and Dr. Lisa Sanders, the real life Dr. House! We’re biased, of course, but we found the real life medical mystery and prognosis fascinating. Listen for yourself and let us know if you agree: https://soundcloud.com/replyall/42-blindspot
Towards the end of the podcast, Reply All Producer Sruthi Pinnamaneni asks Dr. Sanders, “do you think ‘Hope’ could have done something better than going to CrowdMed after seeing the series of Doctors?” Dr. Sanders replies, “I think it was a reasonable thing to try. I think CrowdMed has an interesting perspective on this.”
If you’re a rare or chronic illness patient, you’re probably accustomed to tweaking your schedule, eating habits, exercise routines, and even your chores and social life. Even when your life does go according to plan—your symptoms may not. One moment you might feel fine and the next you’ll be looking at a weeklong hospital stay.
In the beginning, I struggled to balance my symptoms with running a business and trying to maintain friendships. My disease took a lot out of me and at the end of the day, no matter how much I may have wanted to go out and meet a friend or take a business meeting in person, catering to my symptoms had to come first.
I decided what I really needed was to get organized. I sat down with my laptop and started a data collection on my own life.
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 doctors don’t understand why. Your friends and family, however, seem to have plenty of answers. While they may be trying to help, their comments only come across as minimizing, insensitive, and judgmental. Fortunately, there are ways to discuss your undiagnosed illness without destroying relationships. Following are a number of statements that your loved ones should avoid as well as effective alternatives that can foster a supportive conversation about your health.
1. “You should try getting more exercise.”
While exercise is generally a good thing, I don’t need judgmental lifestyle advice. I need medical advice from a medical professional. I’m battling a demon far greater than you could ever imagine. It’s not about exercise. It’s about a legitimate medical condition that requires complex medical care. To suggest otherwise is minimizing and hurtful.
Instead, say: “What can I help you with around the house?”
What is Genetic Sequencing?
Imagine that your body has an instruction manual. It would be millions of pages long, delegating everything from the color of your eyes to the shape of your toenails. Now imagine that there was a single typo somewhere in those millions of pages. It is this typo, or mutation, that causes disease. Genetic sequencing is a computerized method of locating that mutation.
There are two types of genetic sequencing:
- Whole genome sequencing analyzes all of a patients genes. It costs more but produces more information for research.
- Exome sequencing analyzes the small portion of your genes where most mutations occur.
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 by something you had not considered, but some may be a message from your body that something is wrong.
Keep in mind that most of these symptoms may occur periodically in any person’s life and are easily explained by other causes. If your symptom becomes severe, seek medical attention immediately. If you are experiencing other health issues, however, you may want to mention your strange symptom to your doctor. It could be another clue in finding the right diagnosis.