No Family Is the Same: A Caregiving Parent Perspective on Divorce...As a young child, I was surrounded by the most amazing family. There were family gatherings, family vacations, and memories. And then, one day, nothing was the same. I found...reactionscomments
Inclusivity and Rare Diseases: 6 Things for Friends and Family to Consider...Social situations can be very difficult to navigate with a rare disease or chronic illness. From navigating logistics to friends just not quite getting it, it can certainly feel exhausting...reactionscomments
"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...reactionscomments
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...reactionscomments
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...
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...reactionscomments
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...reactions3replies
Active 6 days agoHow 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...reactions5replies
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...reactions3comments
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...reactions2comments
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...reactionscomments
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...reactionscomments
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...reactionscomments
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...reactionscomments
Journey to Chronic Rare Disease Treatment...Living with a rare disease is difficult. Getting access to treatment for rare diseases can be inaccessible for many. Many rare disease medications are expensive and subject to price gouging...reactionscomments
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...reactionscomments
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...reactions1reply
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...reactionscomments
Active 6 days agoWhat 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...reactions3repliesAwareness
