Just a few days after her wedding, when most people are on their honeymoon, Morgan Alamo was told that she may have cancer. Who would have thought that the wedding…
Who doesn’t like a good comeback story? Especially when it's about POTS? There are far, far, far too many challenges in life that can make a person come undone. From…
"I have chronic Lyme Disease and it's chronic because it took so long to get it treated." William and Mary student Alexis Plofchan is the subject of a seven-minute documentary directed by…
A quick search of the Internet will tell you that fatigue is a common symptom of almost every disease, disorder, and syndrome. There are other symptoms that tend to be…
Juvenile idiopathic arthritis (JIA) is the most common form of arthritis in children. It occurs when the body's autoimmune system attacks healthy tissue and causes inflammation of the joints. What triggers…
One teenager with Hunter syndrome doesn't let anything hold him back. This doesn't go unnoticed. Hunter syndrome is a rare inherited disorder which prevents production of a key enzyme that…
Christmas 2016 seems like a lifetime ago. In fact, I can't figure out if my hair grows twice as fast as it used to, or if time is passing at…
Duchenne muscular dystrophy is a very serious and fatal disease that slowly destroys every muscle in the body. This rare disease affects one out of every 3,500 people and mostly…
12-year-old Jack Bolton has had spinal muscular atrophy (SMA) since he was born. He is confined to his wheelchair because of SMA, which causes his muscles to weaken as he…
Everyone has a story. Every person has something that they can share. Reading about another person’s story can help you and your family cope with Hunter syndrome. Also, learning about…
Andrew Graham was diagnosed in 2009 with a rare autoimmune condition called ankylosing spondylitis, or AS. This disorder primarily affects the bones in his back and causes his vertebrae to, over…
So there’s this Greek guy who happens to be suffering with frequent bouts of pain and fatigue as a result of living with sickle cell anemia (SCA). And when he…
Lynn Holman believes that her pregnancy may be the reason she got diagnosed with hereditary angioedema (HAE). At first, Lynn thought she had a bad allergic reaction one morning because…
Being married to the love of your life would mean that you know everything there is to know about one another. Physically, emotionally, and mentally. Right? Well, Gene is married…
I want you to think about spinal muscular atrophy (SMA), a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. Then, think about the word: DIGNITY. Dignity…
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…
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