Managing Overstimulation as a ParentOverstimulation occurs when sensory input overwhelms an individual's ability to process and respond appropriately. For medical caregivers and families, overstimulation can be triggered by the constant sounds, sights, and activities...reactionscomments
Sponsored: A hopeful road for a family affected by a fatty acid oxidation disorderBy UltragenyxLC-FAOD stands for long-chain fatty acid oxidation disorders, which are rare metabolic conditions that run in families. With each of these disorders, a specific enzyme that helps the body...
The Weight of Rare Disease GiveawayThe Weight of Rare Disease Giveaway is now closed. Thank you for your interest! Living with a rare disease comes with daily challenges – both seen and unseen. The physical...reactionscomments
How I Rate Various Pains With Multiple Rare DiseasesI don't remember what it's like not to be in pain. On a good day, I might say I'm "without pain." But honestly, I say that because I get tired...reactions5comments
Glasses as a Form of Unique Expression With Rare DiseaseLast week, I made the familiar journey from optometrist to optician, getting a new glasses prescription and ordering new frames. I have done this many times but always get excited...reactions2comments
Finding Your Advocacy Voice: Embracing a Safe CommunityAs caregivers, warriors, and allies for individuals with rare diseases, finding our advocacy voice is crucial to raising awareness, promoting understanding, and driving positive change in the healthcare landscape. It's...reactions4comments
Journaling As a Daily Tool for Rare DiseaseWhen I was first diagnosed with narcolepsy, I felt like I was drowning. I floundered in confusion. All of these new symptoms were thrust upon me. I didn't know where...reactions12comments
Grief and Reimagining Advocacy GoalsLife with a rare disease can be unpredictable, and the mental health toll can be significant as we often grapple with loss and grief. Grief doesn't have to be for...reactions1comment
Balancing Work and Caregiving: Parenting Kids With Special NeedsEvery morning, I wake up with a familiar sense of déjà vu as I feel like I have barely closed my eyes before it's time to wake up and do...reactionscomments
How Therapies Treated My Musculoskeletal Injuries from Rare DiseaseDue to short bowel syndrome (SBS), I've endured years of malnutrition, and even the years I've been well-nourished, I still have nutrient deficiencies that have significantly impacted my musculoskeletal system...reactions1comment
The Importance of Connecting With Mentors as a CaregiverCaregivers of individuals living with rare diseases often find themselves navigating uncharted territory. The complicated medical needs, limited treatment options, and lack of awareness about the condition can make the...reactions5comments
Horses Helping Rare Diseases: Equine-Assisted TherapiesDecember 13th celebrates National Day of the Horse in the United States. On this day, people are encouraged to honor the economic, historical, and cultural contributions that horses have made...reactions3comments
My Approach to Taking MedicationsIn my experience and that of my family, with rare disease comes several additional health conditions. As a result, there is usually a lot of medications to manage. I really...reactions2comments
How to Manage Fluctuating Symptoms With Rare DiseaseHave you noticed that your symptoms fluctuate or change, sometimes unexpectedly, as a person with a rare disease? I have type 1 narcolepsy with cataplexy, and it feels like my...reactions1comment
Staying Informed on Your Rare Disease for Better AdvocacyEver since I've been diagnosed with the first of my 3 rare diseases, Ehlers-Danlos syndrome (EDS), I've tried to stay informed. It's been important to me because, as with most...reactions3comments
Who Am I? A Journey About IdentityNot long ago, I had a conversation with my daughter that caught me off guard, though not for the reasons one might expect. We sat together, enjoying a rare moment...reactions3comments
Don't Put Things Off With Rare DiseaseDon't get me wrong—I can sometimes be the queen of procrastination. I have my "lazy" moments. But I want people to understand that if, sometimes, well, often, I don't do...reactions1comment
From Reactive to Proactive: Self-Administered TreatmentThere's been a big change this year in how I approach my rare disease, hemophilia A. I'm treating myself at home once a week. Until now, I have always treated...reactions5comments
Tips for How to Set Boundaries With OthersMore likely than not, if you're reading this, then you've likely experienced someone crossing your boundaries as a chronic illness/rare disease patient, telling you or implying that your condition isn't...reactions6comments
Shining a Light on Rare DiseasesAs a young mom raising a child with a rare disease, I've learned that feeling pressure from uncertainty and heartache is normal. My son's diagnosis of an ultra-rare disease turned...reactionscomments
