3 Things I Learned About Doctors After My Son's Rare Diagnosis...It is a lot of work, but as a patient or family member, advocating for yourself is needed to ensure...Reactions0reactionsComments0 comments
When You’re a 'Poster Child' for Your Rare Disease...It felt as if I had been doomed to get this disease, and it led me to worry excessively that I...Reactions0reactionsComments0 comments
Art As Rare Disease Advocacy ...It's like I can "see" what I want to create, and when I add on globs of color, I focus on making...Reactions0reactionsComments7 comments
Shifting the Focus of Goal Setting...Taking an honest look at what I am actually willing to do and what I actually can do is the key...Reactions0reactionsComments0 comments
Advocacy Anywhere: Communication With Your Doctor...My passion is to empower others to be active participants in their care, too....Reactions0reactionsComments0 comments
Embracing Mindfulness: 31 Affirmations for Rare Disease Caregivers...Reflecting on the past year, I realize that last year was a test of self-discovery, leading me down a path I never thought...Reactions0reactionsComments0 comments
New Year’s Resolutions and Rare Diseases...In the worst phase of my rare disease, I was in a dark place, surrounded by sadness. I felt like I...Reactions0reactionsComments0 comments
Finding Your Way After Your Child Is Diagnosed With a Rare Disease...We, as parents, didn't ask for this. But I brought my son into this world and want to do everything I can...Reactions0reactionsComments0 comments
Getting Back Into Advocacy After Burnout...In that case, that is not realistic for me as I do not have the time to be interviewed 10 times...Reactions0reactionsComments0 comments
Living for the Good Things...I live with narcolepsy, which is often misunderstood. As an invisible disability, society is hesitant to accept my disability as my...Reactions0reactionsComments0 comments
10 Reasons Why Students With a Rare Disease Should Consider a 504 Plan...As much as I want to always be at my daughter's side, I won't always be, so I have...Reactions0reactionsComments0 comments
Parenting and Rare Disease: 5 Bonding Activities to Try With Your Child...If he could not tolerate that or simply was not in the mood, I would sit him next to me and talk Reactions0reactionsComments0 comments
Which Specialist Needs to Know Your Symptoms? All of Them....Besides the fact that doing so allows for my symptoms to be documented throughout my medical records by a multitude of providers...Reactions0reactionsComments0 comments
Reflecting on the People We Would Never Meet Otherwise...One of my major fears when it comes to my illness is mortality. I try not to go down that train...Reactions0reactionsComments0 comments
Parenting and Rare Disease: A Journey Through Grief and Acceptance...The day my amazing little boy was born, I knew he was different. I was 22 years old and forced to grow Reactions0reactionsComments0 comments
Keeping Your Family Connected When Raising a Child With a Rare Disease...I have learned how to put myself on my to-do list so I don't risk feeling too overwhelmed....Reactions0reactionsComments0 comments
Personal Grooming With a Rare Disease...One of the many aspects of my life that is affected by my rare disease is how I groom myself....Reactions0reactionsComments0 comments
How Do I Find a Specialist for My Rare Disease?...If you have seen a geneticist for an evaluation, they may be able to advise you, as well....Reactions0reactionsComments0 comments
Why Caregivers Feel Isolated...Though every rare family is different, I think many of us would agree that this life brings a lot of isolation to our...Reactions0reactionsComments0 comments
Creating Business Cards for Rare Disease Advocacy...Or, it can be as elaborate as a website, social media platforms, and QR codes to websites....Reactions0reactionsComments0 comments
