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...
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...
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...
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...
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...
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...
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...
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...
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...
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments1 comments
Dietary ChangesHi, I have been diagnosed with a rare genetic condition, AMACR deficiency, that so far is asymptomatic but I do have an elevated level of phytanic and pristanic acid in...Reactions0reactionsComments12 replies
It's Just the Way You AreI just turned 60. I have been questioning many things, regarding my health, for as long as I can remember. I went to doctors, or was taken, and never really...Reactions0reactionsComments2 comments