Update: In June of 2016, we had the pleasure of interviewing Aleeya Young, an amazing teen with CF. Well, this Sunday she will be receiving a $10,000 2016- 2017 Sacks for CF…
In sharp contrast to my other two posts recently about the power of humor in living with Cushing’s disease, my heart goes out to another woman, a mom who’s had…
Most people think of children when they hear cystic fibrosis. Thankfully with new treatments and new therapies people are living much longer. This gentleman, named Gary Anderson, is a perfect example.…
When we are faced with a limiting health issue where performing "simple" everyday activities becomes a challenge, our self-confidence and self-worth can dwindle. This can happen with any health condition…
We can all say that our mothers gave us the gift of life. But how many can say that they gave the gift of life in return? One teenager in…
There comes the time when families ask the question,"When should we have another baby?" After having one child, and knowing the responsibilities that you have to take on, it can…
We want to celebrate our patient contributors and writers for their efforts in helping the rare community by bringing awareness, understanding and compassion to often neglected disease. The following article…
Here’s a story that serves as a sobering reminder of how genetic diseases can lay dormant and undetected for years, and how quickly they can come roaring to life… with…
After watching another YouTube video on fatty liver disease, I’m on a tear, specifically in addressing two types: First: Non-alcoholic fatty liver disease, which is also known as NAFLD and…
I met a woman at a patient conference last year who confided she had just been diagnosed with narcolepsy. She said because she knew next to nothing about the disorder, she…
How do you feel about your life today? Are you living every day in exuberance? Do you love what you’re doing? Are you excited every single moment? Are you looking…
The above photo is of Kristina by Sandro Georgi Photography. Check out Kristina's story of living with narcolepsy by clicking here. If you visit Patient Worthy or our Facebook page, then…
You may remember AS warrior Charis from our interview entitled "Move Over Barbie. This is the Model Little Girls Should Idolize". She discussed her journey with Ankylosing Spondylitis, detailing her…
I cannot get enough inspiration from Moms and Dads who are heroically trying to find answers when their children are sick—and doctors are scratching their heads! I read about a…
To read part 1 of Teresa's post, click here. The sooner you treat [during an HAE attack], the better HAE meds work! The second stage of attacks is the swelling that is…
First described in 1882 by Heinrich Quincke, angioedema was regarded for more than one century as a rare disease. Subsequently, it was established that the hereditary form of the disease…
Life can be overwhelming, especially when living with complex regional pain syndrome (CRPS). The continual pressure to look good, to perform well, and to compete for wealth and affection creates…
Man, I’m not so sure that I believe in angels, but my heart is overjoyed whenever I hear about strangers who’ve donated ANYTHING to help ANYBODY! With aplastic anemia—depending on…
Outside his window, Josh watched, enamored, the colors of the sunset shifting, turning the sky orange, and then pink, and finally a bruised purple. He could almost forget where he…
Since I was very young, I have been mesmerized by the athletes in the Olympic games. The power, the grace, the dedication, and the celebration. I remained glued to my TV for…
Her name is Katelynn. Junior in high school. Third-year starter for her volleyball team, and a good one at that. She has it made... except for one thing. She suffers…
Imagine sitting in a doctor's office and hearing your child be diagnosed with cystic fibrosis (CF), or another grave illness. In this paralyzing moment, whatever was consuming your life minutes before…
There’s an interesting blog post you’ve got to check out—especially if you’ve been feeling guilty about telling people “No” while living with or caring for a loved one who has…
Click here to read Part 1 of Theresa's HAE Diagnosis. A couple of months later I flew back to Nebraska, got sick on the plane with an abdominal attack at…
When I was 20 years old, my new husband and I celebrated our marriage with family and friends, with a luncheon where there was no alcohol. Neither of us drank…
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