Starting a Family When You Have Congenital Adrenal Hyperplasia...But you may need to switch to a different type of steroid that is safer to take while pregnant, such as hydrocortisone...Reactions0reactionsComments0 comments
Transitioning to Adult Care With Congenital Adrenal Hyperplasia...This process should be gradual to give you and your caregiver(s) time to learn and adjust to a new normal....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 was...Reactions0reactionsComments2 comments
Early Intervention Gave Me Hope...At 22, a new and young mom, I knew something wasn't quite right the day my son was born. Though I hoped it...Reactions0reactionsComments1 comments
Calling Out with Grace...The ability to do so is a necessary universal skill to use in all our interpersonal relationships, not just reserved for online interactions...Reactions0reactionsComments3 comments
Disclosing Rare Disease Needs...Personally, I've noticed that I frequently have to do a lot of explaining to get my needs met....Reactions0reactionsComments2 comments
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....Reactions0reactionsComments3 comments
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...Reactions0reactionsComments5 comments
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...Reactions0reactionsComments2 comments
Caring for a Child With a Rare Disease: Conventional Versus Specialized Education...As I continued down this road, I expected a maze of options, but in reality, there were very few to choose from....Reactions0reactionsComments3 comments
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...Reactions0reactionsComments7 comments
Changing Scarcity Mindset to a Growth Mindset With Rare Disease...it is not or the fear of what it may not be....Reactions0reactionsComments2 comments
From Heartbreak to Hope: Turning Our Rare Disease Journey Into a Mission...My child was slow to reach milestones, but the doctor reassured us each time we asked....Reactions0reactionsComments1 comments
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...Reactions0reactionsComments4 comments
Caring for a Child With a Rare Disease: The Difficult Decision to Return to Work Outside the Home...Though I am no expert, I highly suggest that you draw out scenarios A, B, and C and be prepared to...Reactions0reactionsComments0 comments
How to Advocate for Yourself in Social Situations With a Rare Disease...It's certainly a learning process, and it is often difficult to stick up for oneself in social situations....Reactions0reactionsComments3 comments
How to Deal With Letdowns in Your Awareness Efforts...by any of my 3 causes....Reactions0reactionsComments0 comments
Job-Seeking as a Caregiver for a Child With a Rare Disease...Finding a job with a supportive and understanding employer can be an ongoing challenge for those of us raising a child with...Reactions0reactionsComments0 comments
When Living With a Rare Disease Negatively Affects Sex Life...Sigh… I hesitated writing about this topic out of the initial shame I felt in even having gone through any of what I Reactions0reactionsComments5 comments
The Power of Friendship in the Rare Disease Community: 3 Reasons to Connect...Sharing your story can be cathartic for you and a lifeline for someone on a similar journey wondering if there is anyone else Reactions0reactionsComments0 comments
