Life as the Primary Caregiver: Insights from a Rare MomIn the rare disease space, a full-time caregiver of someone with a rare disease has a unique mindset. There is often compassion, love...reactionscomments
How My Therapist's Questions Help Me Manage Medical TraumaAs a person with a history of medical trauma related to my rare diseases, sometimes I put expectations on myself that are...reactions7comments
When You Don’t Want Advice on Your Rare DiseaseHow many times have you had to sit and listen to someone give you advice on living with your rare disease? Probably...reactions3comments
Community Conversations: Sharing Our Experiences With Rare DiseasesEvery rare disease journey is unique, but we have found here at RareDisease.net that our members have shared experiences. From difficult diagnoses...reactionscomments
Sponsored: Let Your Voice Be Heard and Help Raise Awareness of MyositisBy argenx Living with myositis is full of challenges. From numerous doctor appointments to managing symptoms and finding a treatment that’s right...
Caring for a Child With a Rare Disease: Vacations? What Are They?As parents, we cherish the moments when we can create lasting memories with our children, especially during vacations. However, for those of...reactions1comment
What to Know About Support GroupsSupport groups are a resource and outlet commonly recommended for navigating and coping with an identified life stressor such as a rare...reactions6comments
FDA Approves Gene Therapy: A Rare Disease Parent Advocate Reflects on Hope and Challenges AheadToday, I want to share with you the mix of emotions that have flooded my heart as a 15-year rare disease parent...reactions3comments
After a Rare Disease Diagnosis: My Avalanche of ComorbiditiesWhen I was diagnosed with my first rare disease, I got sicker. What? Of course not. Getting a diagnosis doesn't change how...reactions3comments
Mourning the Loss of the Old MeI’m often asked, “How did you come to terms with how your rare disease changed your life?” or “How did you mourn...reactionscomments
Caring for a Child With a Rare Disease: The Difficult Decision to Return to Work Outside the HomeEvery day, parents and caregivers of children with rare diseases face emotional, financial, and logistical challenges. These challenges force us to make...reactionscomments
Summer With Sun SensitivityI love summer — the sunny weather, staying light outside later, and vacations. I live in an area filled with parks, trails...reactionscomments
Do You Take Rare Disease Rest Days?As a person who suffers from a rare and chronic disease, every day is a calculation dependent on my energy levels and...reactions2comments
Treatments for Duchenne Muscular DystrophyDuchenne muscular dystrophy (DMD) is a genetic disorder in which the muscles in the body weaken and break down over time. This...reactionscomments
Understanding Duchenne Muscular DystrophyDuchenne muscular dystrophy (DMD) is a rare genetic disorder that causes muscle weakness and degeneration that gets worse over time. It is...reactionscomments
Caregiving, Advocacy, and the Drive to Keep GoingIf you are a caregiver or a parent of a child with a rare disease, do you ever feel alone, confused, or...reactions1comment
Disclosure in the WorkplaceWhen it comes to your rare disease, have you ever struggled in the workplace over who to tell anything to? I have...reactions10comments
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
My Rare Disease Does Not Make Me a BurdenI recently came across a journal article discussing the "challenges" of parenting a child with my rare disease. This triggered feelings of...reactions1comment
Groin Stronger: How My Body Is Learning to Trust Itself AgainWhen I injured my groin putting on a pair of pajamas last year, I had no idea it would lead to a...reactionscomments
