Tags » Rare Disease

'You don't plan for grief of this kind': father of baby who died of aHUS speaks for first time

The B.C. father of a five-month old baby that died of a rare disease is speaking for the first time.

Harbour Reimer was diagnosed at five-weeks old with atypical hemolytic uremic syndrome (aHUS) back in November. 508 more words


“What My Fictional Character Abigail Clemmons and Selena Gomez Have in Common”

 “What Fictional Character Abigail Clemmons and Selena Gomez Have in Common”

Credit : Chuck Arlund

My name is Jady Davis, the author of “The Adventures of Abigail Clemmons.” As someone with a serious rare disease, I never settled for my circumstance. 514 more words


All I could ever have hoped for

It’s been an ODD week….not in any events that have occurred or how our daily lives have gone…but an odd week within me.

It is odd for me to feel as… 2,018 more words

About Me

Hi – My name is Mary Jo Armstrong :) I am 28 years old and live in North Carolina with my amazing husband. We have two spoiled fur babies, Sophie (malti-pin) and Phil (boston terrier). 150 more words



Hi everyone: I made it through the colonoscopy and EGD! It was a rough time; I’ll be very honest. So glad it’s over and now can move on to the… 85 more words


Kill the Paps-Episode One, Update Three

“Isn’t it a bit unnerving that doctors call what they do practice?” —George Carlin

We are almost two weeks post infusion #3. We are almost one week from the first scan since beginning Avastin. 888 more words

Daily Prompt [Blush]

Any tendencies I had to blush while hopping into my hospital gown are now gone.  I will strip naked in front of any nurse or doctor… 134 more words