How Educating Myself About Treatments Probably Saved My Lungs (If Not My Life)...The day I was diagnosed with MAC lung disease, alarmingly, my pulmonary doctor's first question to me after confirming the diagnosis was,"How...reactions9comments
How Is Hemophilia Treated?...Hemophilia is a bleeding disorder that prevents the blood from clotting properly. This can cause excessive bleeding, especially in the muscles, joints...
How Is Mucopolysaccharidoses Treated?...Mucopolysaccharidoses (MPS) are a group of rare genetic disorders that affect the body's ability to break down a particular type of sugar...
Groin Stronger: How My Body Is Learning to Trust Itself Again...When I injured my groin putting on a pair of pajamas last year, I had no idea it would lead to a...reactionscomments
Sajjona: Trisomy 18 Thriver...Sajjona was born on October 3,2017. She weighed 3lbs 9 oz and was 15 3/4 in long. Shortly after birth she was...reactions3comments
Ignored Symptoms...I became sick and was treated by doctors who only diagnosed patients by what the books say! They did not listen to...reactions2comments
When Rare Disease Needs Don't Make Sense to Others...Living with a rare disease comes along with many complications – some medical, some financial, some psychological, and some social. In my...reactions4comments
'It Takes a Village...' Building a Supportive Rare Disease Village...When you become a parent, people say you will have a village that will be there for you every step of the...reactionscomments
How Clinical Trials Are Transforming the Future for Rare Disease Warriors...Prior to becoming a rare disease caregiver, I must admit that I overlooked and even doubted the significance of clinical trials. Historical...reactionscomments
Fighting for Rare Disease Medication Coverage...Living with a rare disease comes with a variety of complications. Some of these complications are physical due to the medical nature...reactions3comments
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...reactionscomments
How I Gradually Changed My Relationship With Medical PTSD...My rare disease experiences began when I was 8 years old, and it wasn't long after that I developed medical post-traumatic stress...reactionscomments
Surrounded by Water...Since I was born I've been ill. At 5 years old I had bladder, stomach, and bowel problems. I had bladder tests...reactions5comments
Getting Emotions Out: Why It Matters and How to Do It...Emotion suppression is something I frequently witness, and at times, I am guilty of doing it myself. I know firsthand and am...reactionscomments
Paving the Way for Change...The journey of a mother like me (with a child diagnosed with a rare disease) comes with challenges most cannot relate to...reactionscomments
The Journey of Diagnosing a Rare Disease...The quest for a rare disease diagnosis is often referred to as a "journey" or "odyssey." The reasons it may take years...
RareDisease.net Giveaway Terms and Conditions...These Official Rules apply to any giveaway (or "Promotion") published on RAREDISEASE.NET, a Health Union ("Health Union" or "We") owned and operated...reactionscomments
Life as a Rare Disease Parent: My Motherhood Journey...My motherhood journey has come with many unique challenges that most other mothers cannot relate to. It’s been a deep journey that...reactionscomments
Treating Rare Kidney Diseases...Many rare kidney diseases currently have no cure. However, there are treatment options that can help. There are several factors to consider...reactionscomments
Alternatives for Managing Chronic Pain...Chronic pain is pain that lasts for longer than 3 months. Some rare diseases can cause significant pain in the body. This...
