A chronic Lyme disease diagnosis will change your life. But sometimes, the biggest battle is just getting the diagnosis in the first place. In part one of PW Contributor Alexis…
Franciscan Institute for Science and Health in Steubenville, Ohio sponsors research on metabolic defects which can lead to rare mitochondrial related seizure disorders. While this is a limited rare disease program- if…
Imagine for a moment what your version of a perfect life looks like. Perhaps it’s a glamorous life filled with fame and fortune, or perhaps it’s a life where you…
Ambry Genetics is a service provider to research and development physicians and patients. they've been around since 1999 and have become an authority and trusted source in genetic counseling. Ambry…
According to the Cystic Fibrosis Foundation, about 30,000 people are living with CF in the US and just about 1,000 new cases are diagnosed each year. Cystic Fibrosis (CF) is a chronic inherited disease.…
Have you ever felt lost in your own body? Have you ever temporarily lost your hearing due to massive ringing in your ears? Have you ever had the world go…
I am not a fan of reality television. But I am a helluva fan of Yolanda Foster, a Real Housewife of Beverly Hills. Though her and I probably don't have…
Okay okay. While Taylor Swift is known for bringing celebs together on the stage... ...she isn't known for any significant medical findings that might advance the field of cystic fbrosis. BUT she…
10 Things I have learned from living with Ehlers-Danlos Syndrome 1. It is not that bad to be spontaneous When I was younger I had plans and lists for…
10 Dinge, die mich das Leben mit dem Ehlers-Danlos Syndrom gelehrt hat 1. Spontan sein ist gar nicht schlecht Als ich jünger war hatte ich Listen und Pläne für…
CysticLife.org, an online network for the cystic fibrosis (CF) community, is embarking on a historic fundraising effort to support community driven research in CF. With your help, CysticLife and Mayo Clinic…
Only THREE more days for families, patient advocacy groups, and researchers to give input into NIH’s new initiative on undiagnosed disease research. Do you have ideas about strategy, metrics, approaches…
In addition to NIH and NORD there are many university-based centers for rare disease. Today’s feature: The Boler-Parseghian Center for Rare and Neglected Diseases at The University of Notre Dame,…
Doctor, please take my baby's blood! The IDF encourages Louisiana state officials to sign into law routine screenings of newborns for SCID, or Severe Combined Immune Deficiency. The IDF's ultimate goal is to…
Welcome to December 2015 PatientWorthians! 'Tis the season for sharing and do we have some stories for you! As we round #NERVEmber this week, we want to highlight some hope for our…
Expert knowledge, however indispensable, is no substitute for a generous and comprehending outlook upon the human story with all its sadness and with all its unquenchable hope.” -Winston Churchill We…
Whenever I tell someone “I have Lyme,” I get reactions varying from “Oh that shouldn’t be a big deal,” to “Oh, yeah I heard that can get bad.” I even…
Happy Day-After-Thanksgiving PatientWorthians! Around this time of year, we like to emphasize the amazing gratitude in the chronic disease world. Living with a chronic illness is often a serious bummer, to…
For Part 1 of Laurie's Life with Dysautonomia, click here. For anyone who is still doubting Dysautonomia and POTS, I've come up with what I call the Dysautonomia Party Trick Challenge.…
I am thankful that I have been able to embrace the fight I have against the crippling disease of ankylosing spondylitis (AS) and I am thankful that in the process,…
Have you read the first part of Kathryn's interview? Check out This Honest Mom Doesn't Want You to be Ashamed of Your Rare Disease. “Moving to the west coast has…
I may look "fine" to you on the outside but what I'm experiencing on the inside is not "fine". I have a couple of different forms of an incurable invisible…
Low Starch Roasted Fall Veggies a Side Dish for Thanksgiving Servings: 2 to 4 2 large golden beets 1 bulb fennel 1 small red onion optional: 1 to 2 kohlrabi…
For many like myself, the holidays can be bittersweet, and sometimes hard. Everyday, I am thankful for the people who are a part of my life. Sometimes though, I cannot…
As someone struggling with chronic illness, you are probably no stranger to the stomach problems that come along with treatment or just a reality of your disease. By now, you might…
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