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:…
You wake up from a full night's sleep. You begin your daily routine: Get dressed, brush your teeth, comb your hair... and suddenly you have no more energy to do anything…
A recent study suggests there may be relief for dry eye sufferers. Researchers at the Scripps Research Institute found promise in introducing regenerative cells to the gland responsible for tear production. The…
dolor colosal. hinchazón de mamut. Hipersensibilidad. Los cambios drásticos en la temperatura corporal. Imagínese estar en ese tipo de dolor todo el tiempo. Francamente, suena un poco como una pesadilla.…
At this time last year, I was 89 lbs and at the beginning stages of recovery from a year of IV and oral antibiotics for the treatment of Lyme disease.…
"Every moment on this earth is an extraordinary, destiny defining gift from God." –Billy Cox Happy Thanksgiving Patient Worthians!
Patient Worthy is wishing the very best Thanksgiving to our U.S. readers. Even if your meal isn't traditional, or is accompanied by a regiment of medications, we hope that you…
Having a rare disease is exhausting on so many levels. The pain, the lack of sleep, the lack of money, the doctors’ appointments… Where is the fun and the spontaneity?…
Recently I was asked to write a piece about what I am thankful for this Thanksgiving. My first reaction was, "Oh God, Thanksgiving is actually here again?" I don't have…
"As Long as you're still breathing, There's still a purpose for your life." - Billy Cox I find these words very inspiring and comforting. Even when you question why you…
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…
Si las enfermedades raras estaban participando en un concurso de belleza, donde la "belleza" significa "poco conocido", "mal entendido", y "casi imposible de diagnosticar" -Ehlers-Danlos (EDS) sería a la altura…
Para muchos, como yo, las vacaciones pueden ser agridulce, ya veces duro. Todos los días, me siento agradecido por las personas que forman parte de mi vida. A veces, sin…
Let's take a stroll down memory lane to gain some perspective on Tourette’s syndrome… Years ago, when the famed comedian and director, Larry David, produced an episode of Curb Your Enthusiasm, which…
The human body is an amazing system, when you really stop to think about it. Just taking a breath takes millions of processes—from chemical reactions to mechanical activities and more—working…
Cancer may have been called the Emperor of all Maladies but FOP-Fibrodysplasia Ossificans Progressiva is certainly the King. We place it lower only because it affects so few; one in every…
I was sitting across the table from my biology study partner on a Saturday afternoon, when I noticed he was awfully quiet all of a sudden. I looked up from…
Ah, I remember the simple times, when all you had to worry about was tracing your hand with a crayon and color in a turkey. Now I am an adult…
Carcinoid tumors are very rare tumors that develop slowly in the digestive tract or in the lungs. In its early stages, there are no symptoms, but as the tumor gets…
Given how Tourette Syndrome is so wildly misunderstood, you’d be forgiven for thinking that it’s an ultra-rare disease, and that people living with it are as elusive as a Bigfoot.…
So…I just found out that apparently time travel is not something you can ACTUALLY do. There go all of my carefully-laid plans for what I want to be when I…
Básicamente todo el mundo ha visto afectada por los altos costos de la atención médica en algún momento de su vida, y para muchos, no mucho cambió cuando Obamacare (Affordable…
I dig those peeps at WorryWiseKids.org who are helping to raise the bar to better understand Tourette’s syndrome (TS). Their mission is to lessen the suffering that children with Tourette's…
Let's talk cholesterol—the bad kind, 'cause there're different kinds. LDL cholesterol, or low-density lipoprotein cholesterol, is the kind you DON'T want, because it can lead to a whole host of…
A few months ago, I went on a rant about the FDA's failure to approve a drug that would benefit children with Duchenne muscular dystrophy, or DMD, a muscle-wasting disease.…
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