Reach for the STARS! Why Media Representation MattersRecently, I had the privilege of attending Portland Pride. The weekend was jam-packed with all sorts of events and parties celebrating the beautiful and diverse LGBTQIA+ community. As a queer...Reactions0reactionsComments3 comments
Managing Overwhelm: Giving Ourselves Permission to Take a MomentReacting versus responding. There's a difference between them that can be ignored or forgotten. Reacting is that gut punch reflex that tells us we must act now, not later —...Reactions0reactionsComments2 comments
Dear Caregiver...As the sounds settle down for the night and your child falls asleep, your night is just beginning. You ensure that everything that needs to get done gets done –...Reactions0reactionsComments5 comments
Fertility Preservation for Rare Disease WarriorsIn a time marked by heightened awareness and discord surrounding reproductive health, caregivers of children with rare diseases carry a unique burden – the preservation of their child's fertility. As...Reactions0reactionsComments0 comments
Exploring Non-Drug Pain Management OptionsChronic pain, unfortunately, seems to accompany rare diseases too often. I began having chronic pain early on with my rare disease, and it is what led to my diagnosis of...Reactions0reactionsComments0 comments
My Strategies for Living With a Rare Disease Long TermLiving with a chronic rare disease is not for the faint of heart. For most of us, there is no finishing line. Hard days can drag into bad days, which...Reactions0reactionsComments12 comments
Benefits of Taking an Advocacy BreakSince becoming a rare disease mom, I have been relentlessly dedicated and solidly committed. However, more so now than ever, I have found a crucial need to pause and refresh...Reactions0reactionsComments5 comments
My First Rare Disease ConferenceRecently, I had the opportunity to attend a national conference for the rare disease that is narcolepsy. This conference had a plethora of people attending, including people with narcolepsy (such...Reactions0reactionsComments2 comments
Grappling With the Possibility of Having Another Rare DiseaseMy mother has the same rare diseases that I have and among her many chronic health conditions, she also has worsening vision issues. She was ultimately diagnosed with retinal dystrophy...Reactions0reactionsComments2 comments
Parenting a Child With a Rare Disease and Reflecting on the Power of PauseThe day my precious daughter was diagnosed with a rare disease is recorded in my heart, forever reminding me of a story filled with love, resilience, and the transformative power...Reactions0reactionsComments3 comments
Life as the Primary Caregiver: Insights from a Rare MomIn the rare disease space, a full-time caregiver of someone with a rare disease has a unique mindset. There is often compassion, love, and unwavering dedication to make sure that their...Reactions0reactionsComments0 comments
How My Therapist's Questions Help Me Manage Medical TraumaAs a person with a history of medical trauma related to my rare diseases, sometimes I put expectations on myself that are unrealistic or harmful. To help me reevaluate my...Reactions0reactionsComments7 comments
When You Don’t Want Advice on Your Rare DiseaseHow many times have you had to sit and listen to someone give you advice on living with your rare disease? Probably a lot! From doctors to family members to...Reactions0reactionsComments3 comments
Community Conversations: Sharing Our Experiences With Rare DiseasesEvery rare disease journey is unique, but we have found here at RareDisease.net that our members have shared experiences. From difficult diagnoses to dealing with treatment and insurance barriers, our...Reactions0reactionsComments0 comments
Sponsored: Let Your Voice Be Heard and Help Raise Awareness of MyositisBy argenx Living with myositis is full of challenges. From numerous doctor appointments to managing symptoms and finding a treatment that’s right for you, it can feel overwhelming at times...
Caring for a Child With a Rare Disease: Vacations? What Are They?As parents, we cherish the moments when we can create lasting memories with our children, especially during vacations. However, for those of us with medically complex children, like me, the...Reactions0reactionsComments1 comments
What to Know About Support GroupsSupport groups are a resource and outlet commonly recommended for navigating and coping with an identified life stressor such as a rare disease, a specific health condition, or even mental...Reactions0reactionsComments4 comments
FDA Approves Gene Therapy: A Rare Disease Parent Advocate Reflects on Hope and Challenges AheadToday, I want to share with you the mix of emotions that have flooded my heart as a 15-year rare disease parent advocate. On December 8, 2023, the FDA approved...Reactions0reactionsComments3 comments
After a Rare Disease Diagnosis: My Avalanche of ComorbiditiesWhen I was diagnosed with my first rare disease, I got sicker. What? Of course not. Getting a diagnosis doesn't change how sick you are or how many symptoms you...Reactions0reactionsComments3 comments
Mourning the Loss of the Old MeI’m often asked, “How did you come to terms with how your rare disease changed your life?” or “How did you mourn the loss of the old you, and how...Reactions0reactionsComments0 comments
