Living for the Moment: Doing the Unexpected With Pompe Disease...The neurologist had me do a muscle biopsy and a blood test for Pompe. He then referred me to see By Dwayne Wilson4 min readBookmark for laterReactions 0 reactions Comments0 comments
How Is X-linked Hypophosphatemia Diagnosed?...A urine test is also called a urinalysis.... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
Big Moves for Better Care...made a big decision. ... By Alex Gaudlap3 min readBookmark for laterReactions 0 reactions Comments3 comments
5 Changes I Would Like to See in the U.S. Healthcare System...I’ve experienced sexism on several occasions. One male doctor refused to prescribe me a common pain medication (not a narcotic) for a UTI.... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments4 comments
Community Members Share Their MAC Lung Disease Experiences...Navigating a MAC lung disease diagnosis can be challenging. There can be a lot of uncertainty and many questions that arise.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Questions to Ask Your Doctor About Pompe Disease...Being tested for Pompe disease can be a confusing process. Most people will take a blood test followed by genetic testing.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
What Is the Social Health Network?...Whether you have worked on a new project, created a new campaign, or received a new recognition, this is the perfect place to... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Hygiene and Chronic Illness: 5 Tips for "Lazy" People...Unfortunately, having cystic fibrosis (CF) makes me exhausted, tired, and unwell a lot.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Community Views: We Are Rare, But Not Alone...Turns out, it was a rare immune deficiency disease.” “Finding a decent doctor who knows about your condition.”... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
Pompe Disease: What You Need to Know...Changes in a person’s genes, known as genetic mutations, can lead to low or no GAA production. Pompe disease is By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
Managing Stress and Chronic Illness...Here are a few techniques I use to manage stress on a semi-regular basis while living with a rare, chronic disease: I... By Tatiana Corbitt2 min readBookmark for laterReactions 0 reactions Comments0 comments
Terms to Know When You Have Adult-Onset Still’s Disease...Quotidian fever: A fever that recurs in a regular, usually daily, pattern.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Are Forums Still Relevant in the Social Media Age?...A new diagnosis or unexpected symptoms can be a scary experience.... By Editorial Team 2 min readBookmark for laterReactions 0 reactions Comments0 comments
How Exercise Kept Me Out of the Hospital Until I Was 26...Being a part of these teams meant practices or games 6 days a week, sometimes doubles when it was pre-season.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
What Type of Doctors Treat Rare Kidney Diseases?...Depending on your insurance, you may need a referral from your PCP to see a specialist.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Clinical Trial Participation...Clinical trials follow a plan, which you may hear called a protocol.... By Editorial Team 4 min readBookmark for laterReactions 0 reactions Comments0 comments
How to Deal With Tough Mornings and Chronic Pain...You lie there for a few more minutes because you’ve only been awake for a few seconds, but you already feel so much pain.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Pompe Disease and Genetics...If you have a family history of a genetic condition like Pompe disease, you may want to get tested to see if... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments0 comments
Understanding Non-apparent Disabilities in the Workplace...Only a fraction of employees report a disability to an employer.... By Editorial Team 3 min readBookmark for laterReactions 0 reactions Comments2 comments
Rare Diseases and Preparing for an Emergency...However, being prepared for a potential emergency can make a nightmare of a situation slightly more manageable to navigate.... By Jessica Hanson3 min readBookmark for laterReactions 0 reactions Comments0 comments