Living an Authentic Life With a Rare Disease...I was diagnosed with narcolepsy halfway through my college career. My disease onset had been quick. Just a few weeks after getting a bad flu, I started exhibiting narcolepsy symptoms... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments0 comments
What Is X-linked Hypophosphatemia?...X-linked hypophosphatemia (XLH) is a rare disorder that causes low phosphorus levels. This happens because people with this condition pass the mineral phosphorus in the urine rather than using it... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
Erin Leibowitz...Erin Leibowitz is a writer and patient advocate who was diagnosed with metastatic pancreatic neuroendocrine cancer shortly before her 30th birthday. Neuroendocrine cancer, also known as NET cancer, is a... By Editorial Team 1 min readBookmark for later
My Accidental Rare Disease Diagnosis (Part 2)...This is the second article in a 2-part series. Be sure to check out Part 1: New Symptoms, New Fears: The Beginning of My Rare Disease Diagnosis. After my 2... By Dusty Terrill3 min readBookmark for laterReactions0reactionsComments0 comments
Fighting Misconceptions Can Save Lives: Rare Disease Surveillance...Misconceptions abound amidst many health conditions – particularly rare diseases – and even among the medical treatments available to prevent or manage health conditions. This occurs not just outside the... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments0 comments
In America: What's That?...The In America survey is now closed. Are you living with a rare disease? No matter where you are in your rare disease journey, we want to hear from you... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
Transitioning From Pediatric to Adult Care With a Rare Disease...Young people living with a rare disease are living longer than ever. That’s the good news. The less-good news is that not many places exist for teens and caregivers to... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
Transitioning From Pediatric to Adult Care...Does anyone have experience with transitioning from a pediatric healthcare team to and adult care team? Do you have any tips for others navigating this, either as a patient or...Reactions0reactionsComments3 repliesCopingCaregivingHealthcare Team
Xanadu I or Don't I? A Rare Disease Roller Skating Odyssey...In the earliest days of the COVID-19 pandemic, my partner Gwenn and her friends decided to order roller skates and take a spin together around a cul-de-sac. It felt fun... By Shawn Decker3 min readBookmark for laterReactions0reactionsComments0 comments
Hope for Cushing’s Disease...I was diagnosed with Cushing’s disease in ‘98. Textbook case with everything effected. Pituitary resection lead to reoccurrence so I had Gamma Knife. I went into remission and ended up...Reactions0reactionsComments1 repliesAwareness
Yoga Doesn’t Cure My Autoimmune Diseases..."Oh, you have XYZ disease? Have you tried yoga?" Wow, if I had a nickel for every time someone tossed this cookie-cutter suggestion my way. I'll take another nickel, please... By Jessica Hanson3 min readBookmark for laterReactions0reactionsComments2 comments
New Symptoms, New Fears: The Beginning of My Rare Disease Diagnosis (Part 1)...In July 2015, I had my little boy. He was 8 pounds and 10 ounces of pure perfection. He was my third baby, and a surprise one at that. My... By Dusty Terrill5 min readBookmark for laterReactions0reactionsComments0 comments
Life With a Rare Disease: How the Little Things Add Up...I wrote about this topic 10 years ago, and while I forgot I had written about it, it's something I've been talking about lately as I've been struggling with this... By Annie-Danielle Grenier2 min readBookmark for laterReactions0reactionsComments1 comments
Active 4 days agoHow Do You Cope?...Does anyone have tips or things that help you cope with living with a rare disease? What do you do to manage symptom, treatment, or other challenges?...Reactions0reactionsComments33 repliesCoping
Community Views: Navigating the ER as a Rare Disease Warrior...Living with a rare disease creates obstacles to healthcare. Specialist doctors understand rare diseases best. But sometimes, you need emergency care. And most doctors in the emergency room (ER) are... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
The 2024 Social Health Awards Program...Editorial Note: Nominations for 2024 are now closed. We are very excited to announce the launch of the 2024 Social Health Awards program! The Social Health Awards is an awards... By Editorial Team 1 min readBookmark for laterReactions0reactionsComments0 comments
The Power of the Words We Tell Ourselves...I didn't fully realize how much my physical health impacted my mental health until recently. Sure, I know I've struggled with depression, anxiety, and anger as part of my medical... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments2 comments
Finally Diagnosed... Now What?...A rare disease is one that affects less than 200,000 people. Rare conditions are hard to diagnose because not much is known about them. A survey by the National Organization... By Editorial Team 3 min readBookmark for laterReactions0reactionsComments0 comments
SSI and Medicaid: Moving to a Place Based on Healthcare..."What do you mean I'm not eligible for Medicare?" I groan into the phone. "I'm on Social Security, aren't I?" At this point, the Social Security agent kindly explained to... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments0 comments
