Most people know that high cholesterol is a ticking time bomb, and that it’s important to eat heart healthy foods low in saturated fat and cholesterol. Public health awareness—and the…
Kim Pimley is a mover and shaker, a businesswoman on the go. She’s one of those energetic people you see running up an escalator, to save time, and also, just…
September is IPF Awareness Month. A great way to raise awareness is by engaging your community. Write a letter to the editor of your local newspaper and share your story…
With rare disease, everyone is familiar with the concept that early diagnosis typically means better patient outcomes. Such is the case with acromegaly. According to a recent article in healio,…
Hipercolesterolemia familiar heterocigótica (o HeFH), nunca has oído hablar de él? Es un bocado. Es también una condición que hace que los niveles de colesterol de alta peligrosidad y, si…
This summer, while visiting friends in Chicago, I met the most amazing woman Angie. She was out for the first time since she had her beautiful daughter, so we looked…
Broken crayons still color an regardless of whatever part of your body is not cooperating with you, you are not any less beautiful, purposeful, and important. The colors of your…
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…
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