The Dystrophic Epidermolysis Bullosa Research Association of America (Debra) describes EB as "The Worst Disease You've Never Heard Of". It's a painful disease without a cure and it's rarity makes…
¿Alguna vez has oído hablar de la deficiencia de Glut1? Basada en una historia ofrecida en News-Medical, y no tenían los padres de su hija diagnosticadaa los 4 años de…
Emma Gaul’s story is a good reminder of how quickly life’s plans can change when your body turns against itself. Less than two years ago she was a vibrant and…
My brain is CRAZY! At least, that’s the way I feel. I cannot explain how infuriating it is to have what I refer to as, a dystonia brain! So, what’s…
Idiopathic Pulmonary Fibrosis or IPF is a disease where the tissue in the lungs becomes scarred and stiff making it harder for a person to breathe. When the tissue thickens the…
As someone who went through long-term antibiotic treatment, I can speak to the tremendous financial strain it had on my family. Well, if you live in Massachusetts, new legislative action…
Glucosa. Esto significa que el azúcar, ¿verdad? Está en su cuerpo, ¿verdad? Pero, ¿cómo se transportan y cómo sabe que su cuerpo la cantidad que necesita para el transporte? Lo…
Last night as part of my boyfriend’s birthday gift, we attended a St. Paul Saints’ baseball game in downtown St. Paul, Minnesota. Anyone who knows me even a little bit…
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…
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…
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