Signs and Symptoms of Rare Kidney DiseasesRare kidney diseases can affect people of all ages and backgrounds. There are more than 150 different types of these diseases, and...reactionscomments
Treating Rare Kidney DiseasesMany rare kidney diseases currently have no cure. However, there are treatment options that can help. There are several factors to consider...reactionscomments
Where's Your Line? Navigating Repeated IV Attempts with a Rare DiseaseMy experience with a rare disease, which was the same for my mother too, is that our health is complicated, and so...reactions4comments
What to Expect: Your Guide to MAC Lung Disease TreatmentBeing diagnosed with MAC lung disease is overwhelming for many people. The good news is that most infections with Mycobacterium avium complex...reactionscomments
Why a Rare Disease Diagnosis Matters Beyond TreatmentRecently, a friend of mine, Fiona, visited her cardiologist. She has been having some troubling symptoms that have been going on for...reactionscomments
Rare Sibling Advocacy: 7 Ways to Make an ImpactIn the delicate balance of raising siblings, the journey can take unexpected turns when one child is navigating the challenges of a...reactionscomments
Community Views: Navigating the ER as a Rare Disease WarriorLiving with a rare disease creates unique obstacles to healthcare. Specialist doctors understand rare diseases best, but sometimes you need emergency care...reactions8comments
5 Tips for Coping with Stress and Chronic IllnessLiving with a rare disease can be stressful in its own right. For example, many patients face a history of medical trauma...reactionscomments
Why Joining Your Rare Disease Community Is ImportantWhen my son received his rare disease diagnosis back in 2020, I was told about a private Facebook group for families. At...reactionscomments
Mastering the Infusion: A Guide to Self-Administration and Port CareLiving with hereditary angioedema (HAE) means you must be ready for a swelling attack at any time. Learning to give yourself your...reactionscomments
Setting Boundaries: What Self-care Looks LikeWhile I started my medical journey when I was 8, it has taken nearly 30 years to understand the relationship between setting...reactions3comments
The Future of HAE Care: Understanding Gene EditingHereditary angioedema is a rare genetic condition. It is often called HAE. People with HAE experience severe swelling in different parts of...reactionscomments
Beyond the Needle: Overcoming HAE “Infusion Fatigue”Hereditary angioedema (HAE) is a rare genetic condition. It causes sudden and painful swelling in the body. For many people, life-saving infusions...reactionscomments
Understanding Hereditary Angioedema (HAE)People with hereditary angioedema (HAE) may spend years searching for answers. The road to an accurate diagnosis can be long and difficult...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...reactionscomments
How to Start Your Own Advocacy GroupAdvocacy groups are dedicated to a specific cause. They are made up of motivated members who come up with plans to make...reactions3comments
5 Rare Life Challenges: A Caregiver PerspectiveAs a rare mom, I do my best to hold my head high and remain positive. But the reality is, it's extremely...reactionscomments
How I Stay Informed on Ehlers-Danlos Syndrome AdvocacyEver since I was diagnosed with the first of my three rare diseases, Ehlers-Danlos syndrome (EDS), I've tried to stay informed. It's...reactions3comments
How Do I Find a Specialist for My Rare Disease?When you are diagnosed with a rare disease, you will likely have many questions and concerns. Finding a specialist who can guide...reactionscomments
When It’s Not Laziness: Navigating Procrastination and Rare DiseaseDon't get me wrong—I can sometimes be the queen of procrastination. I have my "lazy" moments. But I want people to understand...reactions1comment
