There’s one person I learned about today who has an admirable life mantra. The young man is D’Marco Jackson, and he lived with aplastic anemia (AA), but he succumbed to…
No matter how mentally flexible or strong you are, we all have a breaking point. Unfortunately, many of us tend to push ourselves as far as possible until we reach…
Anger. Who doesn’t get angry? From big to small stressors in life, there are far far far too many triggers to choose from that can set us off. But, what…
What would you do if you had a disease so rare that you went weeks or months without a diagnosis? What would you do if after your diagnosis, you told…
While the national conversation on healthcare has recently and rightly focused on the political debate over the Affordable Care Act’s future, it’s worth remembering what’s happening on the “street level”…
Imagine watching movies with friends, not knowing that you have narcolepsy and struggling to stay awake. Your eyes keep rolling and you keep fighting to stay awake. Yet you cannot.…
BIG props goes out to a 43-year-old woman who’s living with sickle cell anemia! Having been accused of “jonesing” for more pain medication in the hospital, she quickly became sick…
My girlfriend called me the other day—crying hysterically. I couldn’t understand her much, but it didn’t matter. I know she’s raising her first-born child with familial dysautonomia (FD). Problems related to…
Growing pains usually occur in younger children and are equally common in girls and boys. They are characterized by aches and pains and often occur in the lower limbs, usually…
Really? Really. As if having one serious chronic disease isn’t enough, what makes God say, “Hmm…Let’s give this poor, innocent child, another chronic illness"?! In this case, I'm talking about…
There is a well-known football player who is in one of the biggest fights of his life, and his courage and fierce determination to help raise awareness about sickle cell…
As a young girl, Joanna found a cat scared and stranded in a tree. Muffin became her first cat, and so began Joanna’s lifelong love of rescuing animals. But Joanna has…
The following blog post was written on October 4th, 2016 by a #raredad whose daughter is battling a chronic illness. With his permission, we are republishing this powerful memory here.…
Peter and his wife Ashleigh call their son Riley their “little fighter.”This is his nickname because he made it to his first birthday, which was well beyond what doctors told…
Teresa is a 16-year-old girl who is changing the face of sickle cell anemia (SCA) disease. And… SHE… ROCKS! Instead of sitting back and feeling sorry for herself, this beautiful…
Runner’s high: the euphoric sensation that endurance athletes feel when they exercise for an extended period of time. For those who have never felt it, it sounds like the Fountain…
Sudden. Intense. Pain. It feels like a burning sensation. Your toes, or your fingers, or your knees feel engulfed in flames. There is pressure, and there is pain. Where did…
The way the Japanese government handled Hansen's disease patients during the 20th century wasn't very humane. They were sent to live in sanatoriums, separated from their families, and shunned by…
I love to read a good story about someone overcoming the odds. A young man living with Stargardt disease has done just that this month! He is the first Indian to…
Ever wonder what it’s like to be so sick and disabled that you can’t live a normal life but you aren’t sick or disabled enough to actually be considered disabled?…
Read a really wonderful, inspiring heartwarming story about two old friends which you can read here that I’d like to share to give you and your loved ones in the…
Growing up, the young boy would always hear jets roaring over his neighborhood. This sparked his dream, his passion. Anthony Lickteig-Carter always hoped to become a pilot. Nevertheless, because of his condition,…
I remember reading the words of Evan Davis: “It’s not a bad idea to occasionally spend a little time thinking about things you take for granted. Plain everyday things.” Some…
The brave aren't fearless. They just do the right thing despite their fear. The same goes for resilience. You might think the truly mentally tough never want to quit, but…
Remember the last time you had a bad day? You know what I’m talking about—those times when we come home and plop down on the sofa—and devour a huge piece…
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