Q: What does an autoimmune disease that primarily affects tear glands and salivary glands have in common with a James Clavell novel? A: Nothing, really—other than the fact that the…
Jake Krahe, un joven de Montville Township, Ohio, ha estado viviendo con una enfermedad rara desde que tenía 19 meses de edad informa 19 action news. El diagnóstico específico es la…
DBHD or Dopamine Beta-Hydroxylase Deficiency, is a very rare condition that has only been diagnosed in 20 people. It affects the autonomic nervous system, which controls involuntary body functions like the regulation…
If you are a rare disease sufferer in the midwest, then you should know about the US Pain Foundation's Pain Treatment Expo in August. So why go? You may find…
Glomerulonephritis is a disease where the Glomeruli, located in the kidneys, are damaged, keeping them from properly filtering waste and fluids from the body. Often times, the cause for this…
Surprises often aren't welcome when it comes to your health. Working with your healthcare team to develop reasonable expectations and general timeline can be comforting to many. Do you create…
For some people, following a conventional treatment route of medications, procedures, and more medications is the pinnacle of taking care of your health. Why bother eating better when you can just…
Over the last eight months, I've been in post-treatment Lyme life, allowing me to be more social. With that comes the dreaded social interactions where I have to explain why I'm tired, am…
Los científicos han localizado descubrimiento clave en la categoría de las Enfermedades Raras Un gen que puede jugar un papel en la solución de los misterios de enfermedades autoinmunes como…
When people hear the word “Parkinson’s disease” (PD), they are likely to conjure an image of trembling and unsteady gait. But Parkinson’s disease has many manifestations that strike individuals unequally…
Fifty years ago, a baby born at 22 weeks didn't have a very significant chance for survival. It wasn't until the early 1970s that specialized equipment was developed to take…
Life is hard, Breathing should be the easy part. Breathing should be the easiest thing to do in life. It is an automatic body function that we do without thought.…
Like most little boys, six-year-old Maddox Klossner loves being outside and in constant motion. Maddox has cerebral palsy as well as a form of epilepsy called Lennox-Gastaut Syndrome; both conditions were…
To all the people with narcolepsy out there: how tired are you of having people make light of your condition? The jokes, the playfulness, the jabs—it all gets a little…
Cualquier persona diagnosticada con una enfermedad crónica tiene dos opciones. Opción 1: Vive la vida sin hacer nada y esperar a que llegue el final O Opción 2: Aprender lo…
Do you ever have those days where you're trying so hard to put one foot in front of the other, and then someone has the balls to ask you why…
IPF Awareness Month is this September! Go to these links to get involved: Blowing Soap Bubbles #BlueUp4PF Proclaim it for your city or state. #WhereInTheWorldIsIPF Here are some links for…
When you believe in fairy tales, anything is possible. When you believe in modern medicine, there are some limitations. However, the new use of low-dose naltrexone might seem like a…
This quote is by Patient Worthy Contributor Lisa D. check out some of her articles to learn more about her story: Meet Lisa D. The Best Thing You Can Do…
It's no secret that a diagnosis of idiopathic pulmonary fibrosis, or IPF, can lead to a lot of STRESS. Of course, what is not good for chronic illnesses like IPF?…
It's no secret that Scrubs helped me get through Lyme treatment, as it is surprisingly profound. In Season 5, Episode 6 there is a very pleasant older woman who has…
¿Crees que sabes todo lo que hay que saber sobre la espondilitis anquilosante (EA)? Piensa otra vez. Una nueva investigación ha revelado que las personas con AS tienen un mayor…
Could slowing the progression of Huntington's Disease (HD) be as simple as using a really bright light? Not quite. That's an oversimplification, but let's break it down. In April, researchers…
Where in the world is IPF? To help raise awareness for IPF this September, take a picture of yourself at a popular destination and use that location to help raise…
Kids with rare diseases will often be dealing with doctors for their entire lives and helping them find their voice along the way is important. Letting your child speak to…
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