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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 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.

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CrowdMed Patient ‘Hope’ featured on Reply All Podcast

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.”

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Can Facebook Help Measure the Intensity of Your Flares?

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.

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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 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?”

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Genetic Sequencing: an Innovative Method of Confirming your CrowdMed Diagnosis

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.

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7 Strange Symptoms You Shouldn’t Overlook

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.

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face of a mask-wearing woman with fear in the eye.

The Epidemic No One Is Talking About: Rare Disease [Infographic]

There is an undiscussed epidemic happening in our country, and around the world: rare disease.  Rare diseases are incredibly hard to advocate for, despite the fact that they affect so many people.  Precisely because they are rare, it’s hard for companies to make money off them, doctors to educate themselves about them, and patients to advocate for them.

But combined, as you’ll see in the infographic below, these diseases affect more people than the biggest headline-grabbing diseases on the planet.  And that’s why organizations like UR Our Hope (who we partnered with to make this infographic), are slowly beginning to use the power of the internet and crowd mobilization, to make a case that these diseases need more attention. Read more


5 Diseases Modern Medicine Missed For A Very Long Time

There was a time in history when nearly every medical condition recognized today was an unidentified mystery.  Rabies victims in Europe inspired stories of the holy water-fearing undead and citizens of Salem suffering from Ergot poisoning were hanged for witchcraft, long before medicine had a name and a treatment for either malady.  As medical research and happy scientific accidents led to discoveries like Germ Theory and penicillin, our ability to identify and address common health concerns grew.

Although we have come a long way since the days of humor balancing and unnecessary bloodlettings, there is still a lot that the healthcare field doesn’t know about the complexity of the human body or its response to our ever-changing environment.  In fact, some of the conditions that we would never second guess today were dismissed by the medical community less than a century ago.  A few of them may surprise you.

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What To Do After You’ve Been Diagnosed With A Rare Disease

Rare diseases, also called ‘orphan diseases’ are diseases that affect only a small number of people in the population at any one time.  In the US, a disease is classified as ‘rare’ if it affects fewer than 200,000 people in a given time period, and in Europe if it affects less than one in 2,000.  There are approximately 6,800 such diseases according to the National Institutes of Health (NIH).

Because most rare diseases can cause changes requiring major lifestyle modification (depending on the severity and prognosis), there are several steps you can take to find a solution or to help you cope better with your new situation.

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