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.

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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 and metabolic issues and a history of serious illness. This patient was strong enough to beat leprosy at the age of 13,  urinary tuberculosis and survive years of pain that eventually brought them to CrowdMed for answers.

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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 (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.

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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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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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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 of medicine in which the genome is sequenced, and we are learning more each year about what genes do and how they might be related to disease. As physicians become more aware of the genetic links between patients and their diseases, patients can and should arm themselves with the knowledge they need to manage this new age of information.

I’d like to discuss a few hallmark features that might be present in your family history which could indicate a genetic disorder in your family. As with approaching the rest of your healthcare needs, knowledge is power!

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Are Gluten-Free Diets Good For Us?

I have always been skeptical of the gluten-free craze. I understand the importance of eliminating gluten products in patients with true gluten allergies, but in the past handful of years, the gluten-free diet has gained a cult-like following. Once known simply as the treatment for patients with Celiac disease, gluten-free diets are now being touted as the solution to every ailment known to mankind, ranging from brain fog to obesity. Will this diet maintain a following for the long haul, or will it fade into relative obscurity, joining the leagues of the Atkins or South Beach diets? Only time can tell, but meanwhile, let’s take this opportunity to sort out the myths from reality.

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5 People With Rare Diseases Who Will Inspire You

Life with a rare disease can be a lonely experience.  Often, no more than 100 or 50 people in the entire world share the same disease.  There aren’t the same resources available to these people, or an awareness of the difficulties they face.

Which is why so many people with rare diseases inspire us: they overcome almost impossible obstacles to show us just how much can be accomplished despite limitations and a world that doesn’t understand them.

Below are five beautiful stories (among many) of some people with rare diseases who have inspired many with their bravery and vision.

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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, she had spent years unsuccessfully vainly trying to get a proper diagnosis, and had almost given up hope when she heard about CrowdMed. Continue reading For 10 Years No One Believed She was Sick