3 Ways I Spend Quality Time With Multiple Kids as a Rare Disease Caregiver...My middle is a high-energy, intelligent boy and my youngest is a sassy little girl who just wants to be Reactions0reactionsComments0 comments
Understanding Congenital Adrenal Hyperplasia...before or after a baby is born, during childhood, or later in life....Reactions0reactionsComments0 comments
Developing Elevator Pitches for Rare Disease Advocacy...I did, and he agreed to bring it to the attention of the Cherokee Nation Council. Will it be brought up...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 a...Reactions0reactionsComments0 comments
How to Observe Rare Disease Awareness Day...to having a rare disease or a disability at all but that make my life meaningful and complete....Reactions0reactionsComments0 comments
The Overflowing Cup: Childhood Trauma and Mental Health...After 5 and a half years of counseling, I decided that while it was incredibly helpful, I also needed another form of therapy...Reactions0reactionsComments3 comments
Why Joining Your Rare Disease Community Is Important...I am no expert by any means, but I am proud of the things I have accomplished in such Reactions0reactionsComments0 comments
20 Essential Self-care Practices for Rare Disease Caregivers: My Journey to Resilience...I spill my heart on pages in my journal to look objectively at my circumstances....Reactions0reactionsComments0 comments
Making My Home Disability Friendly Now Rather Than Later...I answered simply that I was previously required to obtain a wheelchair and utilize it to participate in outings for a period...Reactions0reactionsComments3 comments
Recovering From Advocacy Burnout...If you'd prefer to learn a new skill, this is a great time to do so as well!...Reactions0reactionsComments0 comments
Becoming a Do-Not-Resuscitate Patient...I provided a copy to all my providers and involved family members and placed copies on yellow paper on my fridge, in...Reactions0reactionsComments0 comments
Working Remotely as a Caregiver...On the days my son is at school, and I only have my youngest home with me, sometimes I will get her...Reactions0reactionsComments0 comments
Getting a Rare Disease Diagnosis: What's in a Name?...In my own experience, I have found these connections to be invaluable. I'm not currently on any medications for the management of Reactions0reactionsComments0 comments
3 Ways to Help Professionals Understand Your Rare Disease...I have a folder on both my iPad and computer so that no matter what technology I have on me, Reactions0reactionsComments0 comments
Embracing Diverse Coping Mechanisms as Parent Caregivers...For example, I tend to keep up with my daughter's prescriptions and vent to my husband when the pharmacy is out of...Reactions0reactionsComments0 comments
Living With Congenital Adrenal Hyperplasia...But CAH may have a greater impact on quality of life in females than in males. One of the key features of...Reactions0reactionsComments0 comments
Fill Your Cup Giveaway...February 29th is the the rarest date of all, so it is no surprise that this year it is also a...Reactions0reactionsComments0 comments
What It Means to Celebrate Moments as a Rare Disease Family...As I continue to celebrate milestones for my son and family, I do my best to remind myself that it Reactions0reactionsComments0 comments
What to Know About Rare Motor Neuron Diseases...They can make an official diagnosis and, if necessary, start you on a treatment plan that is right for you....Reactions0reactionsComments0 comments
My Experience With New Jersey's Personal Preference Program...As I mentioned before, getting all of this set up is a bit of a pain but once you're enrolled...Reactions0reactionsComments0 comments
