3 Ways You Can Help a Rare Disease Caregiver...Add in a lack of support from a spouse, and I feel alone. It takes a toll emotionally and mentally....Reactions0reactionsComments0 comments
Zebras Can’t Be Tamed: Coexisting With a Rare Disease...You don’t see zebras being ridden, carrying a pack, or pulling a carriage. They are still wild....Reactions0reactionsComments0 comments
Building a Rare Disease Treatment Plan Brick-by-Brick...Building a rare disease treatment plan isn't easy. There isn't a quick-fix....Reactions0reactionsComments0 comments
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 Reactions0reactionsComments2 comments
Life as a Rare Disease Parent: My Motherhood Journey...I am a rare disease advocate, a research contributor, a non-profit founder, and a rare disease writer....Reactions0reactionsComments0 comments
After a Rare Disease Diagnosis: My Avalanche of Comorbidities...couldn't do anything and everything was normal) to regularly seeing an internal medicine doctor, a geneticist, a cardiologist, a neurologist, a...Reactions0reactionsComments3 comments
5 Practical Tips to Thrive After a Kidney Transplant...recovery a little easier for other people who get a new bean....Reactions0reactionsComments0 comments
When Illness Calls: A Tale of One Rare Disease...As a person with narcolepsy type 1, I am used to my life not looking like other people's....Reactions0reactionsComments0 comments
Changing Scarcity Mindset to a Growth Mindset With Rare Disease...I still experience frequent chest pain, but it occurs less now and serves as a reminder to help me take a moment...Reactions0reactionsComments2 comments
Managing Overwhelm: Giving Ourselves Permission to Take a Moment...the tension in a conflict, and so much more....Reactions0reactionsComments2 comments
When You’re a 'Poster Child' for Your Rare Disease...Still, being a poster child patient wasn't a fun thought....Reactions0reactionsComments0 comments
Rare Disease Advocacy Is a Constant, Never-ending Opportunity...A person with FAP has a normal life expectancy with the proper monitoring and treatments required for FAP....Reactions0reactionsComments0 comments
What to Expect During a Disability Hearing (In America)...Share your story or drop a question in the comment section below....Reactions0reactionsComments3 comments
My Strategies for Living With a Rare Disease Long Term...Sometimes, a full dedicated day to rest can help reduce the worst of my symptoms....Reactions0reactionsComments12 comments
When Living With a Rare Disease Negatively Affects Sex Life...back then and was not one to easily discuss anything of a sexual nature....Reactions0reactionsComments5 comments
SSI and Medicaid: Moving to a Place Based on Healthcare...I feel like a shell of a person – unable to sleep, unable to wake, stuck in a torturous land between both....Reactions0reactionsComments0 comments
Life as the Primary Caregiver: Insights from a Rare Mom...In the rare disease space, a full-time caregiver of someone with a rare disease has a unique mindset. ...Reactions0reactionsComments0 comments
5 More Practical Tips to Thrive After a Kidney Transplant...I have always been an independent person, even as a child....Reactions0reactionsComments0 comments
Parenting and Rare Disease: A Journey Through Grief and Acceptance...Having a child with a rare disease has allowed me to become the version of myself I was meant to Reactions0reactionsComments0 comments
