Living

Reacting versus responding. There's a difference between them that can be ignored or forgotten. Reacting is that gut punch reflex that tells us we must act now, not later —...

Chronic pain, unfortunately, seems to accompany rare diseases too often. I began having chronic pain early on with my rare disease, and it is what led to my diagnosis of...

Living with a chronic rare disease is not for the faint of heart. For most of us, there is no finishing line. Hard days can drag into bad days, which...

Since becoming a rare disease mom, I have been relentlessly dedicated and solidly committed. However, more so now than ever, I have found a crucial need to pause and refresh...

Recently, I had the opportunity to attend a national conference for the rare disease that is narcolepsy. This conference had a plethora of people attending, including people with narcolepsy (such...

My mother has the same rare diseases that I have and among her many chronic health conditions, she also has worsening vision issues. She was ultimately diagnosed with retinal dystrophy...

As a person with a history of medical trauma related to my rare diseases, sometimes I put expectations on myself that are unrealistic or harmful. To help me reevaluate my...

How many times have you had to sit and listen to someone give you advice on living with your rare disease? Probably a lot! From doctors to family members to...

Every rare disease journey is unique, but we have found here at RareDisease.net that our members have shared experiences. From difficult diagnoses to dealing with treatment and insurance barriers, our...

Support groups are a resource and outlet commonly recommended for navigating and coping with an identified life stressor such as a rare disease, a specific health condition, or even mental...

Today, I want to share with you the mix of emotions that have flooded my heart as a 15-year rare disease parent advocate. On December 8, 2023, the FDA approved...

When I was diagnosed with my first rare disease, I got sicker. What? Of course not. Getting a diagnosis doesn't change how sick you are or how many symptoms you...

I’m often asked, “How did you come to terms with how your rare disease changed your life?” or “How did you mourn the loss of the old you, and how...

I love summer — the sunny weather, staying light outside later, and vacations. I live in an area filled with parks, trails, and nature, and I love being able to...

As a person who suffers from a rare and chronic disease, every day is a calculation dependent on my energy levels and the energy required to get things done. When...

If you are a caregiver or a parent of a child with a rare disease, do you ever feel alone, confused, or lost in one way or another? I often...

When it comes to your rare disease, have you ever struggled in the workplace over who to tell anything to? I have, and still do. Perhaps it's not necessary, but...

The day I was diagnosed with MAC lung disease, alarmingly, my pulmonary doctor's first question to me after confirming the diagnosis was,"How long do you want to live?" She explained...

I recently came across a journal article discussing the "challenges" of parenting a child with my rare disease. This triggered feelings of shame and anger within me. I asked myself...

When I injured my groin putting on a pair of pajamas last year, I had no idea it would lead to a trilogy of articles. Or physical therapy. But what...