Do You Take Rare Disease Rest Days?...As a person who suffers from a rare and chronic disease, every day is a calculation dependent on my energy levels and the...Reactions0reactionsComments2 comments
Treatments for Duchenne Muscular Dystrophy...This is due to a mutation, or change, in the DMD gene. The DMD gene is responsible for producing dystrophin, a protein that...Reactions0reactionsComments0 comments
Understanding Duchenne Muscular Dystrophy...DMD is far more common in men than women because of the way it is inherited. But in rare cases, it can...Reactions0reactionsComments0 comments
Caregiving, Advocacy, and the Drive to Keep Going...If you are a caregiver or a parent of a child with a rare disease, do you ever feel alone, confused, Reactions0reactionsComments1 comments
Disclosure in the Workplace...And now that I am more comfortable with who I am as a rare disease patient, I can confidently say that if...Reactions0reactionsComments10 comments
How Educating Myself About Treatments Probably Saved My Lungs (If Not My Life)...of at least 3 antibiotics for 18 to 24 months or might instead choose to wait until it progressed....Reactions0reactionsComments9 comments
My Rare Disease Does Not Make Me a Burden...It is not uncommon for me to ponder the ways in which I do not measure up in my relationships...Reactions0reactionsComments1 comments
Walking a Fine Line as a Squeaky Wheel: Communicating With Doctors...I don't expect to be symptom-free, but I do have a threshold for symptoms or issues I am willing Reactions0reactionsComments0 comments
When Rare Disease Needs Don't Make Sense to Others...I can't just hop up at 4 PM to meet up with a friend if they call me needing help...Reactions0reactionsComments4 comments
'It Takes a Village...' Building a Supportive Rare Disease Village...We want them to show up for us, to listen to us, and to offer us hope when we need...Reactions0reactionsComments0 comments
How Clinical Trials Are Transforming the Future for Rare Disease Warriors...My journey as a rare disease caregiver has taught me to value the significance of clinical trials in ways I never imagined....Reactions0reactionsComments0 comments
Questions to Ask Your Doctor When You Have Primary Biliary Cholangitis...If you are facing a PBC diagnosis or have been living with PBC, you may feel a lot of uncertainty....Reactions0reactionsComments0 comments
6 Ways to Navigate Advocacy Burnout...As much as I want to be as open as I can for the community, I'm a firm believer that advocacy...Reactions0reactionsComments0 comments
How I Gradually Changed My Relationship With Medical PTSD...I am not yet fully there in my healing, but I am progressing, and while the work is hard, I know...Reactions0reactionsComments0 comments
Fighting for Rare Disease Medication Coverage...Even though this struggle is personal to me, I know that I am not alone....Reactions0reactionsComments1 comments
Living With Primary Biliary Cholangitis...Primary biliary cholangitis (PBC) is a lifelong condition that causes inflammation in the bile ducts in the liver....Reactions0reactionsComments0 comments
Community Views: What Makes Us Unique...It is so helpful to learn about so many different facets of this community....Reactions0reactionsComments0 comments
Treating Primary Biliary Cholangitis...In this case, you would be put on the transplant list and wait for a liver to be available. After a liver transplant...Reactions0reactionsComments0 comments
Getting Emotions Out: Why It Matters and How to Do It...Emotion suppression is something I frequently witness, and at times, I am guilty of doing it myself....Reactions0reactionsComments0 comments
Paving the Way for Change...The journey of a mother like me (with a child diagnosed with a rare disease) comes with challenges most cannot relate to, and joys...Reactions0reactionsComments0 comments
