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...reactions3comments
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....reactions1replySide EffectsSymptomsDiagnosis
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...reactions5comments
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?...reactions4repliesCaregiving
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...reactions2comments
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...reactions3comments
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...reactions3replies
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...reactions3replies
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...reactions7comments
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...reactions2comments
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...reactions1comment
Sponsored: Share Your Story and Help Raise Awareness for MMN...By argenx Living with multifocal motor neuropathy (MMN) can be a challenge. Everyone’s MMN journey is different—from diagnosis to symptoms to finding the right treatment for you. But did you...
How to Be a Great Friend to Someone Living With a Rare Disease...What characteristics, behaviors, and kindnesses mean the most to you from people who are not living with a rare disease?...reactions6repliesCopingFriends & Family
How to Be a Good Friend to Someone Living With a Rare Disease...When I think about the characteristics I need in a friend due to my rare diseases, I mostly need someone who is empathetic and flexible. In encounters with people who...reactions4comments
Tips for Reducing Medical Appointment Burnout...With a rare disease, it seems it doesn't take much for us to enter the world of becoming a complex rare disease. And with more symptoms or health issues to...reactionscomments
Coping...I'm newly diagnosed and my steroids We're reduced to soon which caused a flare up. Been advised to up steroids which I have . I'm still have bad pain ...reactions1replyNewly DiagnosedCoping
Romantic Partnerships...Has your rare disease impacted your romantic relationships? What challenges or successes have you encountered?...reactions18replies
Have you ever seen your rare disease represented in the media? ...How did it make you feel? Did you feel it was an accurate depiction? Tell us more about what you would like to see and what effect you hope it...reactions3repliesAwareness
