Because I have chronic inflammation due to Lyme disease and POTS, I'm constantly taking supplements and eating the right food to reduce that inflammation. Yes, that means I have to…
There is a campaign to help raise awareness on IPF World called Blowing Soap Bubbles. This is the reasoning behind their campaign, "Blowing soap bubbles is a joyful activity. When…
And now for something completely different… It gives me great pleasure to present my list of VIII (a.k.a. eight) things you have to wait for…and ONE very big one you…
The dream of starting a family is one of our strongest biological urges, as well as a common thread that runs throughout humanity and history. Sadly, not everyone who wants…
Si usted es una de las pocas personas en EE.UU. que viven con el síndrome de quilomicronemia familiar (FCS por sus siglas en ingles), lo más probable es que usted…
Welcome to this week's Editor's Choice! Those with acromegaly have a few options for treatment. Pituitary surgery and clinical trials for new drugs are two of these acromegaly treatment options,…
While you are traveling on your summer vacation, you should stop to help raise awareness for IPF this September. Take a picture of yourself at a popular destination and use…
Hunter Syndrome, is a heartbreaking twist of genetic fate, and we celebrate that the FDA has granted Rare Pediatric Disease Designation to REGENXBIO's RGX-121 Gene Therapy. Hunter Syndrome causes seemingly…
Count your blessings, today and Everyday, It is a blessing just to breathe. Sometimes life moves so fast you can forget to count your blessings. Really it is a blessing…
Is it just me, or is EVERYBODY talking about vitamin D deficiencies these days? Suddenly, everyone I know is coming back from their health check-ups with prescriptions to combat their…
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…
There is currently no cure for most chronic health conditions so treatments are focused on reducing symptoms. I live with a condition called dystonia, a painful neurological movement disorder. Like…
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…
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