The Weight of Rare Disease GiveawayLiving with a rare disease comes with daily challenges – both seen and unseen. The physical toll, emotional strain, and constant uncertainty can feel like an invisible weight. That's why...
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...
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...
The Weight of Rare Disease GiveawayLiving with a rare disease comes with daily challenges – both seen and unseen. The physical toll, emotional strain, and constant uncertainty can feel like an invisible weight. That's why...
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...
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...
The Weight of Rare Disease GiveawayLiving with a rare disease comes with daily challenges – both seen and unseen. The physical toll, emotional strain, and constant uncertainty can feel like an invisible weight. That's why...
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...
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...
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...Reactions0reactionsComments5 comments
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...Reactions0reactionsComments2 comments
Featured forum 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
Featured story 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