"What's Up, Doc?" What the Doctor-Patient Relationship Means to Me...Your relationship with your doctor can have a big impact on your health. Since your doctor is a key member of your healthcare team, they should be someone you are... By Shawn Decker3 min readBookmark for laterReactions0reactionsComments0 comments
I’ve Learned Self-care. What About Self-love?...When we experience chronic illness, particularly a rare disease, I believe it's common for us to have trouble not just providing ourselves with self-care but also self-love. We can easily... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments0 comments
Elle Cole...Elle Cole is a mom of twin daughters. After she and her husband learned their daughter had sickle cell disease, she wished there was a guide to help parents and... By Editorial Team 1 min readBookmark for later
Building a Rare Disease Treatment Plan Brick-by-Brick...It can take years to build an effective treatment plan to treat a rare disease like narcolepsy. I know this from my own personal experiences of living with narcolepsy, as... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments0 comments
Madelung's...I am helping a friend in Gulf Breeze, Florida (next to Pensacola) who is suffering from benign symmetric lipomatosis (Madelung’s disease) He does not use the internet. His neck and...Reactions0reactionsComments3 replies
How far do you travel for medical care?...In your diagnosis or treatment journey, how far do you have to go to see doctors and specialists you feel can help you? Have you ever moved to access better...Reactions0reactionsComments4 replies
Big Moves for Better Care...In 2016, I gave birth to my first child at a military hospital while my husband was Active Duty Marine Corps. I was truly amazed that I gave birth to such a... By Alex Gaudlap3 min readBookmark for laterReactions0reactionsComments3 comments
When a Rare Disease Diagnosis Brings Clarity (And New Concerns)...At age 65, I was diagnosed with cystic fibrosis (CF) by National Jewish Health (NJH) in Denver 6 months after I took myself there for a MAC lung disease evaluation... By Gina Miller4 min readBookmark for laterReactions0reactionsComments2 comments
Some of My Most Absurd Rare Disease Mishaps...Although hilarity is not often associated with a rare disease, I'm glad I can laugh off a lot of the indignities that can come with mine. Having just turned 48... By Shawn Decker4 min readBookmark for laterReactions0reactionsComments0 comments
Pacing Yourself, Pushing Yourself: Managing Energy With a Rare Disease...I am beginning this article on my commute train to work, starting another work week after a typical weekend for me of rest and activities. Like many people with rare... By Natalie Abbott2 min readBookmark for laterReactions0reactionsComments0 comments
How Persistence and Medical Partnership Impacts Diagnosis...I am a complicated rare disease patient. Not only do I have 2 rare diseases and am potentially developing a third, but whenever I have a new medical condition, it... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments0 comments
Landing the Right Advocacy Opportunity...Editor's Note: This article was written by Wunmi Bakare, a Health Leader living with sickle cell disease. Read more of Wunmi's articles at Sickle-Cell.net. Through my work in advocacy, an... By Editorial Team 4 min readBookmark for laterReactions0reactionsComments0 comments
Journey to Chronic Rare Disease Treatment...Living with a rare disease is difficult. Getting access to treatment for rare diseases can make treatment inaccessible for many. Many rare disease medications are expensive and subject to price... By Tatiana Corbitt2 min readBookmark for laterReactions0reactionsComments0 comments
4 Realities of Living With Advanced Symptoms of a Rare Disease...As someone living with advanced lung disease due to a rare disease called cystic fibrosis, I am all too familiar with the symptoms and burdens that this challenge brings to... By Ella Balasa1 min readBookmark for laterReactions0reactionsComments0 comments
My disease ...I have pulmonary fibrosis. I was diagnosed in 2001.. and told I would be dead 'by this time next week '!! I was coerced by the Dr. involved.. into having...Reactions0reactionsComments1 replies
Rare Disease Advocacy Is a Constant, Never-ending Opportunity...Recently, I was reminded, in the most unexpected way, that advocacy doesn't take a break even when it's the furthest thing from your mind. I attended an At-Large Meeting for... By Jenny Jones3 min readBookmark for laterReactions0reactionsComments0 comments
What does advocacy mean to you?...Advocacy can take many different forms - raising awareness in your local community, sharing on social media, and taking legislative action are just a few examples. Are you involved or...Reactions0reactionsComments2 repliesAwareness
Red rash in my mounth...I have red "rash" or something in her mounth for more then 2 months. What do you think this is?...Reactions0reactionsComments1 replies
Community Views: We Are Rare, But Not Alone...Rare diseases can change your life with the everyday challenges it brings. It is hard enough to live with the constant stress of symptoms. It gets even harder when you... By Editorial Team 2 min readBookmark for laterReactions0reactionsComments0 comments
