Finding Your Way After Your Child Is Diagnosed With a Rare DiseaseI remember being in the doctor's office and hearing my son would most likely never walk. As his mom, even though there was an obvious difference between my son and...reactionscomments
10 Reasons Why Students With a Rare Disease Should Consider a 504 PlanAs a caregiver for my daughter, who lives with challenges from a rare disease, I strive to protect her at home and school. As we prepare for her first high...reactionscomments
Living for the Good ThingsLiving with a rare disease comes along with a lot of difficulties. It can be scary at times, too, not having control over your own health. I live with narcolepsy...reactionscomments
Parenting and Rare Disease: 5 Bonding Activities to Try With Your ChildIf you are caring for a medically complex child, it can be difficult to find ways to bond, interact, and keep them busy. Modifying everyday activities based on your child's...reactionscomments
Which Specialist Needs to Know Your Symptoms? All of Them.Time and time again, I'm reminded about the importance of telling every single one of my doctors about my health updates – including bothersome symptoms – even when it is...reactionscomments
Groin Older: Aging With HemophiliaAs a child born in the mid-70s with hemophilia, I was part of a unique generation. Access to new treatments made a more "normal" life possible, or at least one...reactions4comments
Parenting and Rare Disease: A Journey Through Grief and AcceptanceThe day my amazing little boy was born, I knew he was different. I was 22 years old and forced to grow up quicker than most. Motherly instincts, formed over...reactionscomments
Reflecting on the People We Would Never Meet OtherwiseIt's a beautiful thing to meet someone who makes you forget your troubles. - author unknown I have always strived to see the good in every situation. I will admit...reactionscomments
Personal Grooming With a Rare DiseaseLiving with a rare chronic disease isn't for the faint of heart. I live with type 1 narcolepsy, and the long list of things it impacts in my life is...reactionscomments
Keeping Your Family Connected When Raising a Child With a Rare DiseaseRaising a child with a rare disease extends beyond medical hurdles – it encompasses emotional and familial challenges. The impact ripples through our entire family, influencing relationships and our day-to-day...reactionscomments
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 you on your journey is key. The specialist...reactionscomments
Why Caregivers Feel IsolatedBeing a rare caregiver comes with many challenges that the community as a whole can't relate to. Though every rare family is different, I think many of us would agree...reactionscomments
Participating in a Focus Group as a Rare Disease PatientRecently, the Cystic Fibrosis (CF) Foundation invited me to participate in a focus group with other late-diagnosed CFers. It was a fascinating experience that led me to want to share...reactionscomments
My Rare Disease Holiday Survival GuideLiving with a rare disease like narcolepsy means that I have to live my life around my symptoms. Unfortunately, we don't get the holidays off from our rare diseases! Living...reactions3comments
Creating Business Cards for Rare Disease AdvocacyThink back to any time you shared about your rare disease with someone. Perhaps it was with a stranger, and it was just in passing. Perhaps it was with a technician completing a medical test for you...reactionscomments
Into the Unknown With My Rare DiseaseI had a dream (or was it a nightmare?) last night about my disease symptoms increasing rapidly. I woke up blurry-eyed, slightly bemused that this had entered my dreamscape and...reactionscomments
3 Ways You Can Help a Rare Disease CaregiverI am not going to lie and say that being a rare disease parent is easy. It is often a challenge for me to get through the day. I feel...reactionscomments
Don’t Pass on the Pass: An Accessibility FailThe most consistently bothersome aspect of living with hemophilia is my left ankle. Due to both minor and, on rare occasions, major bleeding into the joint, I have very little...reactionscomments
Reflecting on My 20th Anniversary With My Rare DiseaseMy life was upended because of a viral infection 20 years ago. In the fall of 2003, I was working in a children's hospital, and I had many contracts in...reactionscomments
From One Caregiver to Another: What I Learned After My Child's Diagnosis"You are not alone." These are the 4 most common words I choose to tell another caregiver. I know how heavy it feels to receive the news of a child's...reactionscomments
