Exploring Non-Drug Pain Management OptionsChronic pain, unfortunately, seems to accompany rare diseases too often. I began having chronic pain early on with my rare disease, and...reactionscomments
My Strategies for Living With a Rare Disease Long TermLiving with a chronic rare disease is not for the faint of heart. For most of us, there is no finishing line...reactions12comments
Benefits of Taking an Advocacy BreakSince becoming a rare disease mom, I have been relentlessly dedicated and solidly committed. However, more so now than ever, I have...reactions5comments
My First Rare Disease ConferenceRecently, I had the opportunity to attend a national conference for the rare disease that is narcolepsy. This conference had a plethora...reactions2comments
Grappling With the Possibility of Having Another Rare DiseaseMy mother has the same rare diseases that I have and among her many chronic health conditions, she also has worsening vision...reactions2comments
Parenting a Child With a Rare Disease and Reflecting on the Power of PauseThe day my precious daughter was diagnosed with a rare disease is recorded in my heart, forever reminding me of a story...reactions3comments
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
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
