A new study has found that 80 percent of people who have an identifiable genetic risk for cancer due to a mutated BRCA1/2 gene don’t know they're at risk. The…
Joe Marksteiner, a 22-year Air Force veteran and former gymnast, won a title at the 2013 World Powerlifting Championships at the age of 60. This year, now at 65, he…
Just Searching for Answers When diagnosed with a rare disease, cancer, or other illness, it makes sense that you’d research every type of treatment on the market. However, there are…
Meet Ethan Ethan Faneran-Burley was diagnosed at two years old with Mucopolysaccharidosis type 6 (or MPS type 6). It's a progressive, degenerative, and ultimately fatal condition. Those with MPS type…
The Malaysia Lysosomal Diseases Association (MLDA) was formed in 2011 by the hands of eight families. Their goal was to raise awareness and funds for those diagnosed with lysosomal storage…
Misdiagnosis after Misdiagnosis Ever try to google your symptoms to figure out what’s wrong with you? I think we all have at some point. Is it a cold? A virus?…
Who Lives With a Chronic Illness? A Lot of People. More than half of the world’s population lives with a chronic condition and of the 2 trillion the US spends…
As a teacher, It’s not unique to have a kid with a disability in your class. But sometimes it’s hard to know how to adjust your curriculum in order to…
Too often we try to interpret the experiences of others without actually communicating with the very individuals we’re trying to better understand. This leads to false impressions and frequently creates…
Dr Ronny Drapkin, a professor at the University of Pennsylvania says, “One of the things I tell women is that nobody knows your body as well as you do. If…
Hemophilia can affect anyone. Let’s make a few things clear: Women are carriers of hemophilia and pass the gene, but men determine the child’s gender. It’s not all on you,…
To the patient: Accepting your diagnosis doesn’t mean you can’t be mad about it. It simply means you understand that the reality of your life has changed and you know…
Dear Parents, You need to understand that you are taking on a completely new role in your child’s life. You will no longer be controlling their hemophilia for them. It’s…
Why is non-adherence still a problem for many hemophilia patients? There’s a very simple answer here: it’s because hemophilia can be difficult to manage and hard to live with. There’s…
1. Start planning your fundraiser early. Logistics take time. 2. Know your audience. There are a million good causes in the world to donate to. You have to know who…
We often hear the term noncompliance when talking about patient-doctor relationships for individuals with hemophilia. In essence, it means the hemophilia patient hasn’t done what the doctor has asked them…
Most people know the dangers of high blood pressure, high cholesterol, and high blood-sugar. But most people don’t think about high potassium as a problem. Unfortunately, high levels of potassium…
Choroideremia is a disorder that progressively causes you to lose your sight. There is no cure. According to Pinstriped Prospects earlier this year, Markie DeVoe is a 12-year-old living with the…
The Tampa Pig Jig is an annual fundraiser fair held to support NephCure Kidney International, which is a nonprofit that focuses on funding research for Focal Segmental Glomerulosclerosis (FSGS). FSGS…
A mother’s love is like no other. But being told your child will be born with a rare and serious medical condition can be overwhelming. Especially when there’s no cure,…
Rakesh Jain is a professor at the University of Texas Medical School, who recently spoke at a press conference for Neurocrine Biosciences. His talk was covered in an article published…
Alison Laird is 42 years old, and she has GNE myopathy. The disorder causes the progressive deterioration of muscles. It eventually causes immobility. For anyone, the news of this diagnosis…
Being told your child has a rare disease is devastating. Then imagine being told that there’s absolutely nothing you can do about it. That was the reality for these parents,…
Baby Dylan had some sort of medical condition, as reported by The Global and Mail. His family was sure of it. He slept all the time and when he was…
What you’re about to read may sound like fiction. I promise you, it’s not. Two men from Tanzania had their boat capsize while fishing in the Indian Ocean a few…
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