Getting a diagnosis of idiopathic pulmonary fibrosis, or IPF, has got to be scary. It's a progressive disease and the only "cure" is a successful lung transplant (which obviously carries severe…
Hitting up the club? Try hitting up the couch. That’s the reality of life with a rare disease. Forget marathons, Grey Goose, and stilettos. Your life is now Netflix, antacids,…
There are 250+ PI Disorders Out There Primary immunodeficiency disorders were once shrouded in misinformation and a general lack of understanding. Many would argue that this is still true today…
Doctors are trained to look for horses instead of zebras. You may have to inform them that zebras do indeed exist. Sometimes it seems like you are explaining yourself and Behcet's…
When you have a rare disease, it sometimes becomes all-consuming. It's hard not to focus on all the things you can't do now, or wish you could return to the…
Low-fat, low-tyrosine recipes don’t mean you have to go light on the flavor. Because children who have to adhere to a tyrosinemia diet cannot eat foods that include meat, poultry,…
Patient Worthy had the privilege of attending the Acromegaly Community Conference in Chicago April 29th –May 1st. We met some incredible people (stories to come), learned some valuable information (risks of…
Would you climb 1,776 steps to raise money for charity? What if you were in a wheelchair? Julian Backhouse is in a wheelchair, but that isn’t stopping him from climbing…
When most people think of bleeding disorders, they tend to think of Hemophilia. And if they know a little more than the average guy or gal—and let’s face it, if…
According to the Center for Disease Control, there were nearly 35,000 cases of Lyme disease reported in the United States in 2014 (the most recent year on record). While that…
Most of us are familiar with the film The Theory of Everything, which chronicles Stephen Hawking’s affliction with ALS. But there is another film just as compelling: Transfatty Lives by…
At 17, she suffered excruciating chest pain, then collapsed. That is when Tess Dunn got the explanation that she had a hole in her heart. Born in the Philippines, Tess was…
I LOVE pancakes but part of having chronic Lyme means I have a pretty restricted diet. Additionally, I almost never have energy so I need something that will give me a…
From the comfort of the @PatientWorthy couch, we caught another RARE feature on TV! Chicago Fire Fans Won't See Otis Fighting Fires Until His Platelets are Balanced A few episodes…
What makes YOU tick? Is it Lyme disease? It was for Jenny Buttaccio, who suffered for years with "an ever-growing list of strange symptoms" without answers. Until finally, a doctor…
An on the Bel Marra Health website (you can check it out here), talks about the difference between ankylosing spondylitis (AS) and “just back pain.” (It also says that there may…
1. It’s Genetic A hereditary condition, familial hypercholesterolemia (FH) affects roughly 1 in 500 people around the world, according to the National Institutes of Health. Because the disorder is present…
We have all heard about how LIFESTYLE FACTORS can drastically EFFECT HORMONAL BALANCE and ultimately IMPACT WEIGHT STATUS. We read tips and tricks from fitness gurus on social media all…
There are treatments out there to help manage living with Myasthenia Gravis (MG). Whether your infant was born with Congential Myasthenia Gravis or you are an adult who showed a positive result…
Nutrition and exercise are vital to better health and wellness. Still, getting back into the gym with a rare disease is tough. Staying fit and working out can be so challenging post…
Myasthenia Gravis (MG) can make it hard for its sufferers to function normally whatsoever, as is the case for Cathy Liner, a woman living in Salem, North Carolina. Cathy has dedicated her life to…
This post is a follow-up to The Chronic Pain Therapies A-Listers Swear By. If you haven't already read it for an overview of what cupping is and it's therapeutic effects, be sure…
It's funny; when you hear the words "diet" and "nutrition," you tend to think salads, vegetables, fruits, and all that good, healthy stuff. But for people with cystic fibrosis, eating…
Sometimes, focusing on creating something positive out of your rare disease/chronic illness experiences can help you move forward. Here are 3 ideas for you to think about or try: 1.…
Chronic Pain and the Ancient Art of Cupping For those of you who have enough pills to take, you could talk to your physical therapist like Rob and opt for…
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