Reach for the STARS! Why Media Representation Matters...It is a common stereotype that disability or rare disease is only defined by limitations or tragedy....Reactions0reactionsComments3 comments
Managing Overwhelm: Giving Ourselves Permission to Take a Moment...Maybe we need them to sit with us right then and just be with us. It's okay to say what we need Reactions0reactionsComments2 comments
Dear Caregiver......I accept that things may not be done the way I want them to be, but if my child is safe...Reactions0reactionsComments5 comments
Fertility Preservation for Rare Disease Warriors...As caregivers, we don't have the luxury of focusing only on what is written in front of us right now, but...Reactions0reactionsComments0 comments
Exploring Non-Drug Pain Management Options...I began having chronic pain early on with my rare disease, and it is what led to my diagnosis of familial adenomatous...Reactions0reactionsComments0 comments
My Strategies for Living With a Rare Disease Long Term...Living with a chronic rare disease is not for the faint of heart. For most of us, there is no finishing line....Reactions0reactionsComments12 comments
Benefits of Taking an Advocacy Break...During my time off, I realized that as much as I preach self-care, I am not good at it....Reactions0reactionsComments5 comments
My First Rare Disease Conference...Not only because I was able to get out of the house for a few days and sleep in a fancy hotel bed...Reactions0reactionsComments2 comments
Grappling With the Possibility of Having Another Rare Disease...I, myself, am already near developing a third rare disease as it is, and if my mom's RD is another...Reactions0reactionsComments2 comments
Parenting a Child With a Rare Disease and Reflecting on the Power of Pause...The day my precious daughter was diagnosed with a rare disease is recorded in my heart, forever reminding me of a story...Reactions0reactionsComments3 comments
Life as the Primary Caregiver: Insights from a Rare Mom...I am no expert in any of this, but having a positive attitude can change things. Just cross 1 (or Reactions0reactionsComments0 comments
How My Therapist's Questions Help Me Manage Medical Trauma...As a person with a history of medical trauma related to my rare diseases, sometimes I put expectations on myself that are...Reactions0reactionsComments7 comments
When You Don’t Want Advice on Your Rare Disease...This is my personal boundary, and I do my best to maintain it. It helps keep me sane. It does...Reactions0reactionsComments3 comments
Community Conversations: Sharing Our Experiences With Rare Diseases...Start a discussion by entering a question or sharing an experience in the box below!...Reactions0reactionsComments0 comments
Caring for a Child With a Rare Disease: Vacations? What Are They?...While I am truly happy that everyone is able to take these trips, a constant worry goes through my head as I...Reactions0reactionsComments1 comments
What to Know About Support Groups...These can look like online groups, such as on Facebook, or in-person gatherings. They could be informal or by phone....Reactions0reactionsComments4 comments
FDA Approves Gene Therapy: A Rare Disease Parent Advocate Reflects on Hope and Challenges Ahead...Today, I want to share with you the mix of emotions that have flooded my heart as a 15-year rare disease parent advocate....Reactions0reactionsComments3 comments
After a Rare Disease Diagnosis: My Avalanche of Comorbidities...But it helped me confirm that it wasn't "all in my head." It helped me make sense of what I...Reactions0reactionsComments3 comments
Mourning the Loss of the Old Me...I cannot express how important these surgeries were to me; they gave me so much of my life back, and I Reactions0reactionsComments0 comments
Summer With Sun Sensitivity...While trying to stay out of the sun in the summer is nearly impossible, I try my best to make it Reactions0reactionsComments0 comments
