Groin Older: Aging With Hemophilia...As a child born in the mid-70s with hemophilia, I was part of a unique generation....Reactions0reactionsComments4 comments
What Is Power Posing?...symptoms of chronic, rare conditions like hemophilia, sickle cell disease, and more....Reactions0reactionsComments0 comments
Xanadu I or Don't I? A Rare Disease Roller Skating Odyssey...Having moderate hemophilia doesn't prevent me from doing most of what I want to. I could have said, "Yes!"...Reactions0reactionsComments0 comments
What Is a Rare Disease?...Some have been known for hundreds of years, like cystic fibrosis and hemophilia. Others have only recently been discovered....
Myths and Misconceptions About Rare Diseases...Cystic fibrosis, hemophilia, and Gaucher disease are examples of genetic rare diseases that may be diagnosed in children....
The Big Craple Incident: How My Rare Disease Canceled My Travel Plans...Since I have moderate hemophilia, I treat "a la carte."...Reactions0reactionsComments0 comments
Common Tests and Tools for Diagnosing a Rare Disease...The lab checks it for genetic mutations that can cause inherited diseases or defects, such as hemophilia. Amniocentesis is not routinely done....
Caring for a Child With a Rare Disease: Conventional Versus Specialized Education...We made our decision a week before summer began, choosing a school I believe will change my son's life....Reactions0reactionsComments3 comments
How Do I Find a Specialist for My Rare Disease?...Finding a specialist who can guide you on your journey is key....Reactions0reactionsComments0 comments
Becoming a Do-Not-Resuscitate Patient...Disclaimer: A DNR bracelet is not legally binding in my state; only a DNR order is....Reactions0reactionsComments0 comments
Facing a Terminal Illness...This type of care also offers support to your loved ones. Your doctor can give you a referral to a palliative or hospice...Reactions0reactionsComments0 comments
Tips for Finding the Right Doctor...She simply got a new position at a different practice....Reactions0reactionsComments0 comments
Yoga Doesn’t Cure My Autoimmune Diseases...But it's not a stand-alone replacement for medical treatment, and it's certainly not a cure....Reactions0reactionsComments2 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...Reactions0reactionsComments0 comments
Planning a Vacation With a Rare Disease...We'd be going to a small town in a different country....Reactions0reactionsComments2 comments
Who Am I? A Journey About Identity...In my daughter's case, she's a teenager with a love for music, a sharp wit, and a deep sense of empathy....Reactions0reactionsComments3 comments
Finding a Therapist...While I didn’t necessarily feel like I was learning a lot, there was a good vibe....Reactions0reactionsComments0 comments
Getting a Rare Disease Diagnosis: What's in a Name?...While medical professionals can explain a lot of what to expect following a procedure or starting a new medication, there is nothing...Reactions0reactionsComments0 comments
