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
Community Views: The Biggest Misconception About My Rare Disease...It can be enraging to hear someone tell you how you feel or what you have. “It’s just bad allergies!” “Women can’t have hemophilia....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....
The Big Craple Incident: How My Rare Disease Canceled My Travel Plans...Since I have moderate hemophilia, I treat "a la carte."...Reactions0reactionsComments0 comments
Bowled Over Again (in a Good Way!): Being Proactive With My Health Goals...My arthritic left ankle is the thing that affects me the most where my bleeding disorder, hemophilia A, is concerned....Reactions0reactionsComments0 comments
Myths and Misconceptions About Rare Diseases...Cystic fibrosis, hemophilia, and Gaucher disease are examples of genetic rare diseases that may be diagnosed in children....
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....
Staying Informed on Your Rare Disease for Better Advocacy...So, I need to know as much as possible to be my own best advocate!...Reactions0reactionsComments1 comments
Who Am I? A Journey About Identity..."You know, Mom, I don't define myself by my rare disorder. It's a part of me, but it's not who I Reactions0reactionsComments3 comments
Don't Put Things Off With Rare Disease...Don't get me wrong—I can sometimes be the queen of procrastination. I have my "lazy" moments....Reactions0reactionsComments1 comments
Tips for How to Set Boundaries With Others..., telling you or implying that your condition isn't as bad as it seems, as bad as you present it, Reactions0reactionsComments4 comments
Journey to a Rare Disease Diagnosis...Because if we are unable to get a rare disease diagnosis, we are unable to get access to medical treatment!...Reactions0reactionsComments10 comments
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
