We sometimes hear about iron storage problems, but what does that actually mean? Genetic hemochromatosis (GH) is, as the name clearly states, a genetic disease. That means it's one that…
Breast cancer, BRCA1, and BRCA2 are very much in the news these days. While the BRCA mutation is rare, 1 in 8 U.S. women will develop invasive breast cancer, according…
This past Sunday, October 22nd, Steve Nugent, 53, crossed the finish line at the 42nd annual Marine Corps Marathon in Arlington, Virginia. A big group of the people who loved him…
Our bodies are complex and unpredictable machines. We can try our best to keep them healthy, but sometimes nature does its work, resulting in something we never could have planned…
Too much of a good thing can be dangerous. For people with acromegaly, a rare disease caused by too much growth hormone (GH), an excess of this otherwise helpful growth factor can…
You may have heard the buzz during the Zika outbreak in 2016. Many professionals suspected a relationship between the Zika virus and Guillain Barre Syndrome (GBS). Guillain Barre Syndrome is…
When Kent Allen was told he had a year to live, he was hopeless. A year simply wasn't enough time. According to Waikato Times, over ten years ago, Kent was…
All a Hollywood star needs to do is be seen with a designer outfit, bag, or shoes and that company can be propelled from anonymity into the white, hot spotlight.…
The Food and Drug Administration has approved the second cancer treatment that will be totally personalized, proving that these kinds of treatments will become a regular thing moving forward. The…
Ten-year-old Coleman Walsh always wanted to be a professional hockey player and now his dream has come true. According to the Daily Mail, he just signed with the Massachusettss's Babson…
Check out part 1 of this LGS post here. After prepping: Arrive at the airport early – Ask the airline agent at check-in about getting your wheelchair assistance. Use this…
One young lady is working to bring awareness to Gaucher disease through blogging. Not only does Lauren Edwards share inspirational posts and pictures, she also shares the personal stories of…
What happens when you’re not the cancer that everyone is talking about? Funding, research, and headlines can often be noticeably lacking when you’re just a run-of-the-mill, life-threatening gene mutation, according…
Spinal muscular atrophy (SMA) is the leading genetic cause of infant mortality in the USA. So why aren't hospitals in Texas screening newborns for it? That's what a group of…
Memerto Tindongan, born and raised a member of the Ifugao tribe in the Phillippines, brought his traditional healing methods, crafting techniques, and old-world minimalism to the U.S. in 1991. As…
A California judge threw out a $417 million verdict against Johnson & Johnson in a lawsuit by Eva Echeverria - who claimed she developed ovarian cancer after using Johnson &…
The Bank of America building in Dallas, Texas will light itself up in turquoise on Saturday October 28th to show support for Dysautonomia Awareness Month. Everything's bigger in Texas, including…
Traveling is certainly possible and can be more relaxing with some pre-planning and organization. Some of these ideas may not be applicable to you and your family. I have compiled…
Another free event for MDS patients and caregivers is being held by the MDS Foundation! Where: Residence Inn New York the Bronx at Metro Center Atrium Rooms A&B (second floor)…
New findings are coming from a recent study led by researchers at the Journal of the American Medical Association (JAMA) that could have long-term implications for Zika Virus research. Evidence…
A team of researchers at the Cincinnati Children’s Hospital Medical Center has developed a method to test for Gaucher disease using dried blood samples - marking a big breakthrough for the Gaucher…
There's a new treatment for X-Linked Hypophosphatemia (XLH) that may be available in the not-so-distant future. XLH occurs when the kidneys process phosphate abnormally, leading to excess phosphate loss in…
There's an app for everything right? It seems like every day a new app is being created to make life easier, for better or for worse. In the case of…
Happy Friday Patient Worthians! This week, we some news to be happy about! We have an awesome story of how thinking like a start up will help lead to more…
Two-year-old Max Payne from Immingham, England, holds onto the yellow rail of his play pen as he stands up. He glances up at the video camera for a moment, and then…
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