Rare Disease

/Rare Disease

Online Support Groups to Follow

61% of Americans turn to the internet for medical advice. while there is an abundance of healthcare information on the internet, many patients look for something more, such as an emotional connection. These connections are found through online support groups. In fact 1 in 5 online users have gone to the internet for support for [...]

I Am Not My Depression, I Am My Fight

By Liz I. I try to look at it through a logical lens. What is the science behind it? From that perspective, I would have to say it is an illness. Its cause is likely multifaceted. So my depression boils down to a list of symptoms. But does it make a difference when some of [...]

When a Woman Saw My Wheelchair and Asked ‘What Did You do to Yourself?’

By Kayla Shuch A woman who noticed I was in a wheelchair looked at my cast and asked, “What did you do to yourself?”I wanted to slap her in the face and gave a glare as to say WTF? I didn’t do anything to myself. My parents understood my reaction and explained my situation. This experience has become one of the [...]

When Even the Doctors Haven’t Heard of Your Child’s Rare Disease

By Mia Carella Today is Rare Disease Day. According to the National Organization for Rare Disorders, the main objective of this day is “to raise awareness with the general public and decision-makers about rare diseases and their impact on patients’ lives.” After reading this article, please take a minute to think about families in your life [...]

Inside the Mind of a Chronically Ill Person Debating If They Should Post on Facebook

By Jennifer Steidl At first all the people in your life are supportive, but as time goes on and you don’t get better, and you have seen this specialist, and that specialist and tried every suggestion of every caring friend from acupuncture, to massage, to “this amazing doctor that helped my friend who had the [...]

Why I Won’t Sugarcoat My Family’s Medical Challenges on Facebook

By Stephanie Rasmon I share these things because this is who we are. I can’t, nor will I, sugarcoat our lives because that is not our reality. I can’t apologize for using Facebook for its purpose of connecting to loved ones, friends, and bringing strangers together. I suppose I could not share our challenges and [...]

To the Parent Who Helped Encourage My Son With a Disability

By Stephanie Rasmon As he finished his episode of frustration and we slowly made our way to the ramp, we met you and your daughter walking down the ramp. As a bit of encouragement for my son, I pointed in your direction and said “See! That’s where we go to go play.” Without any hesitation, [...]

When They Wheel Your Child Back for Surgery

By Elise Free The anesthesiologist comes in. He asks the questions you know by heart. You run through the list of prior surgeries and procedures and sense for a moment a look of sadness in his eyes. He knows women like you. Mothers like you. They are all the same, listing like groceries, their child’s [...]