Getting a Rare Disease Diagnosis: What's in a Name?...While medical professionals can explain a lot of what to expect following a procedure or starting a new medication, there is nothing...Reactions0reactionsComments0 comments
What is a SWAN?...A child with a SWAN may one day receive a precise diagnosis. But many continue to live in limbo....Reactions0reactionsComments0 comments
Was I Just Soft? A Reflection on Getting a Diagnosis...But I was a dancer and proud of my flexibility, so I would explain it: "Oh, it's because I'm Reactions0reactionsComments0 comments
Participating in a Focus Group as a Rare Disease Patient...It truly was a fascinating experience....Reactions0reactionsComments0 comments
'It Takes a Village...' Building a Supportive Rare Disease Village...In my own experience of raising a child with a rare disease, my village appears irregularly....Reactions0reactionsComments0 comments
Walking a Fine Line as a Squeaky Wheel: Communicating With Doctors...Later, I was corrected by a provider with the disclaimer that being a squeaky wheel can cause doctors to take a patient...Reactions0reactionsComments0 comments
Journey to a Rare Disease Diagnosis...Getting a new rare disease diagnosis can be a difficult undertaking....Reactions0reactionsComments10 comments
Working Remotely as a Caregiver...As a caregiver, taking a "me break" is extremely important. Regardless of when you take this break, it is essential to...Reactions0reactionsComments0 comments
Caring for Hudson: Q&A With a Parent Managing Hypotonic Cerebral Palsy...Within the first few days of being on this medication, he had a seizure that resulted in us getting a CT...Reactions0reactionsComments0 comments
Parental Partnership: Supporting Families With a Child Affected by a Rare Disease...a child with a rare disease....Reactions0reactionsComments0 comments
Keeping Your Family Connected When Raising a Child With a Rare Disease...Raising a child with a rare disease reshapes a family's dynamics in profound ways....Reactions0reactionsComments0 comments
How to Be a Good Friend to Someone Living With a Rare Disease...A sure way to destroy a relationship is through unresolved resentments, which act as a slow source of suffocation to...Reactions0reactionsComments4 comments
Voting with a Rare Disease...Do not be caught unprepared if your polling place has a long line....Reactions0reactionsComments0 comments
Caring for a Child With a Rare Disease: Vacations? What Are They?...– the way I felt as a child during a vacation....Reactions0reactionsComments1 comments
Mental Health and Having a Rare Disease Is a Double-edged Sword...Having a mental illness is a double-edged sword. If you say too much, you're a complainer....Reactions0reactionsComments0 comments
10 Reasons Why Students With a Rare Disease Should Consider a 504 Plan...A 504 plan can be a protection to keep a student in school....Reactions0reactionsComments0 comments
Personal Grooming With a Rare Disease...Living with a rare chronic disease isn't for the faint of heart....Reactions0reactionsComments0 comments
What a Caregiver Means to Me...But I don't agree with that at all. Why is there a certain limit to being a caregiver and another to...Reactions0reactionsComments4 comments
Living With a Rare Kidney Disease...Living with a chronic condition like a rare kidney disease can take a toll on your mental and emotional well-being....Reactions0reactionsComments0 comments
