Popular health site and patient community, Everyday Health, took to its readers last month to find patients who were interested in sharing their stories on rare disease. The site featured multiple personal health stories including editorials on conditions such as Primary Immune Deficiency Disease, Hurler Syndrome, Progressive Supranuclear Palsy, and PKU. Check out the links below to read each patient story.
‘Something Doesn’t Sound Right’: A Colleague’s Hunch Saved My Life
By Rosetta Carrington Lue, Special to Everyday Health
Anemia. Lupus. Arthritis. A torn Achilles. A sprained ankle. These were some of the diagnoses that I received in the beginning of 2012, following a series of seemingly unrelated symptoms.
Home of the Brave: Girl with Rare Syndrome Sings Her Way Into America’s Hearts
By Angie Rodgers, Special to Everyday Health
I was told early in pregnancy that something was “wrong” with my daughter, Grace Anna. Doctors knew it was dwarfism, but they had no idea what type. After her birth, it didn’t get much easier for doctors to determine what was going on with my sweet girl.
My Diet Isn’t About Weight, It’s About Not Getting Schizophrenia: Living With PKU
By Lillian Rodriguez, Special to Everyday Health
When I was born, my mother thought I was an angel. Her angel became modified with “perfect” the first two weeks home from the hospital, when I was so quiet and peaceful, you would have hardly known there was a new baby in the house.
The Right Stuff: Actor Patricia Richardson on How PSP Grounded Her ‘Flying Tiger’ Dad
By Patricia Richardson, Special to Everyday Health
Unlike my accident-prone TV husband Tim Taylor (Tim Allen) on Home Improvement, I actually can fix things! As a Mom in real life– as well as playing one on TV– part of my role is making sure everyone’s all right. On Home Improvement, it was easy to fix the family “crisis” on each episode, usually with a few hugs, lots of laughs, and of course, great writers.
My Son Will Die Without Treatment: So Why Is It Being Denied?
By Jamie Fowler, Special to Everyday Health
When Jack was one year old, we noticed his development was delayed — he hadn’t learned how to roll over and never slept through the night.
Doctors Insultingly Said I Was Seeking Out Attention: They Were Dead Wrong
By Ilana Jacqueline, Special to Everyday Health
Did you know that, on average, it takes about seven years to get a correct diagnosis for a rare disease in the United States? Most of the time we don’t even know what we’re looking for, only that we haven’t found it yet. Continuing on our diagnostic journey when so many roadblocks clutter the way can be gut-wrenching.