Navigating Overnight School Trips When Your Child Has a Rare Disease...As a parent of a child with 2 chronic conditions, preparing my daughter for an overnight school field trip without me was a challenge. However, we successfully navigated this journey...Reactions0reactionsComments2 comments
1 year later, no diagnosis...Mom looking for support...It's been a little over a year since all this started. 2 hospital stays each 1 week long. First both hospitals showed results positive for scleroderma, (and...Reactions0reactionsComments1 repliesDiagnosisSymptomsTips & Advice
Recently been diagnosed ...With dermatomyositis, unfortunately I've been suffering now from it for almost 4 years. I have athrophy my thinking space isn't what it was and the biggest challenge has been getting...Reactions0reactionsComments1 repliesDiagnosisDepressionCoping
How to get diagnosed?...Hello. I have a rare disease no one has heard of. I've tried to get into a rare disease clinic but they require a diagnosis. How do you get a...Reactions0reactionsComments5 replies
Early Intervention Gave Me Hope...When I first heard, "Your child has a global developmental delay," my heart shattered. At 22, a new and young mom, I knew something wasn't quite right the day my...Reactions0reactionsComments1 comments
Calling Out with Grace...I try to approach life by considering others' perspectives, not just mine. Sometimes, though, I fail at this. As a rare disease advocate, I'm not free of or above unintentional...Reactions0reactionsComments3 comments
Disclosing Rare Disease Needs...When living with a rare disease, how often do you disclose your needs? Daily? Weekly? Monthly? Living with a rare disease usually means that other people aren't well-informed about my...Reactions0reactionsComments2 comments
Nags and /or citrine deficiency ...Looking for others who have NAGS and or Citrine Deficiency. I'm curious of how are others doing with having these rare diseases/deficiencies?...Reactions0reactionsComments1 repliesCaregiving
My Child May Have a Rare Disease, but I Still Dream Big Dreams for Her...15 years ago, I became the mother of a daughter who lives with a rare disease. My daughter has a rare disease, but that doesn't stop me from dreaming big...Reactions0reactionsComments3 comments
I am diagnosed with both Neuromyelitis Optica and Myasthenia Gravis. I am searching for others with the same diagnosis. ...I want to know the statistics regarding how many people there are in the world diagnosed with both Neuromyelitis Optica and Myasthenia. Gravis....Reactions0reactionsComments1 repliesDiagnosisSide EffectsSymptoms
10 Empowering Tips to Prepare Your Child Living With a Rare Disease for College...I want to talk to you about something close to my heart – preparing your high school child living with a rare disease for college. In the words of Robin...Reactions0reactionsComments5 comments
What life lessons or advice is important to pass on to children and young adults living with a rare disease?...What can parents and caregivers do to help set their children up for success as they grow up? What has been helpful in your family?...Reactions0reactionsComments4 repliesCaregiving
Rare Disease, Death, and No Clear-cut Answers...I have been fortunate to have my mother and grandfather to share my rare disease journey with me, as one of our shared rare diseases, familial adenomatous polyposis (FAP), is...Reactions0reactionsComments2 comments
Caring for a Child With a Rare Disease: Conventional Versus Specialized Education...Sending my child to a specialized school for special needs has been a deeply emotional journey, marked by feelings ranging from hope to heartache. This decision, often fraught with complexities...Reactions0reactionsComments3 comments
What’s wrong with my daughter...Hi my name is araselys. My daughter’s name is aniah. Aniah is 16, I took her to the hospital a year ago with abdominal pain. They said she had colitis...Reactions0reactionsComments3 replies
Experimental treatments...I have TOS (thoracic outlet syndrome). Unfortunately, the ONLY treatment that I have gotten any relief from my symptoms with is dry needling which the insurance companies consider experimental even...Reactions0reactionsComments3 replies
The Pain of Misunderstanding ...Recently, I thought I had found a group of friends who would stick by my side, who understood what I was going through, or at least tried to. I live...Reactions0reactionsComments7 comments
Changing Scarcity Mindset to a Growth Mindset With Rare Disease...I have been learning more about scarcity mindset, and it got me thinking about how common and easy it is to fall into such a mindset when living with a...Reactions0reactionsComments2 comments
From Heartbreak to Hope: Turning Our Rare Disease Journey Into a Mission...Our rare disease journey began with concerns that the pediatrician dismissed as normal quirks. My child was slow to reach milestones, but the doctor reassured us each time we asked...Reactions0reactionsComments1 comments
