The Narcolepsy Article of Your Dreams Some people would give anything to be able to get take a nap or just fall sleep whenever they wanted to. But that is…
I love chocolate. Who doesn't? Forget the chips and candy… chocolate is numero uno for me. Well, it turns out that there may be another wonderful thing about chocolately goodness:…
Have you been looking for a treatment for factor XIII (FXIII), or fibrin stabilizing factor, deficiency? You may be among the estimated one in 3 million people suffering with lifelong…
This stage of life is hard. I’m talking right now to all the moms who are probably somewhere between late 20’s to early 40’s. You likely have a kid or…
Over the past few months, I’ve been trying to support my dear friend Julie, as she cares for and mothers her child, who was recently diagnosed with transverse myelitis (TM).…
Dear Moms Dealing with Narcolepsy, Just because all the other moms do it, doesn’t mean you have to. Too often, moms feel like they have to be given permission. For…
Have you ever heard of polycythemia vera (PV)? Me neither, and that’s why I had to do some digging. There were quite a few facts that carried some heart-string shock…
Do you remember your first job interview? I sure do, and it was an experience to remember for sure. Being a recent college graduate, I had attended professional seminars on:…
Anyone living with Kallmann syndrome (KS) faces multiple symptoms: no sense of smell delayed puberty possible infertility complications affecting the kidneys, ears, heart, eyes, and parts of the brain Patients…
Talking to the parents or family of a child with a serious illness can be nerve-racking and uncomfortable. Sometimes avoiding the family can seem easier than facing a difficult situation.…
Parents and guardians of a child with chronic illness have it very hard, much harder than most people understand. Listening and reading your stories, I have come to understand that…
Have you been looking for a resource on Ehlers-Danlos syndrome (EDS)? If so, you'll know that it's difficult because EDS is a rare inherited condition, and there aren’t many credible resources to…
Being a parent is tough. We never know if we’re on the right track. Too many thoughts of self-criticism come to mind: Am I doing this right? Do I practice…
Life is one wild ride, isn’t it? The greatest surprises of life may be just around the corner. My life was changed by one little red radio flyer wagon. An…
It’s about one month into school starting and the morning routine is starting to feel and look all too familiar. A family scramble, and my voice echoes the same commands…
On the surface, it seems self-evident that social collaboration can have a positive impact--especially when it comes to Duchenne muscular dystrophy (DMD). Working together with all invested participants to influence…
Legend has it that Archimedes once ran through the streets of Syracuse naked yelling, “Eureka!” because he had discovered an amazing scientific principle. (BTW, if you're thinking, "What on earth…
The days of summer are at a close. The temperature has finally dropped, and there’s a chill in the air. A new season is upon us. Finally! School is back…
I have to admit that I had tunnel vision when it comes to patient advocacy. I naively thought that everyone was direct and honest with their doctors. I believed that…
When I became a parent, I wasn’t acutely aware of what I was signing up for. In the beginning, my role was highly predictable and, in my mind, the newborn stage…
Are you ready to start a family? Or are you considering adding another child to your nest? If so, the March of Dimes shares some insight on what moms or…
Who doesn’t love a good story? A story that speaks to us. A story that spins a negative into a positive. When I listen to a person tell a story, I…
Moving up the ranks in a disease state profile may be difficult, but not impossible. There are tried and tested ways to heighten awareness and get the dystonia message out…
Have you ever wanted to push your own limits and break out of your comfort zone? If so, you’ll know that it is difficult because getting out of your routine…
Have you lost a friend or family member? Do you wonder how you can memorialize or honor their life? This is the dilemma of Kate Shooshan, whose father died of familial…
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