Over recent weeks, stories have emerged regarding the frightening situation in Ukraine. People have lost their lives, their homes, and their sources of income. So what happens to those like…
Marine Corps values include abiding by a code of integrity, respecting others, and respecting human dignity. For veteran John Rubino, this code of conduct helps shape the way he lives…
Compassion [kuhm-pash-uhn] noun A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering. Compassion Corner is…
An article recently highlighted the stories of young patients with Ehlers-Danlos syndrome and how they are taking their diagnoses to spearhead research about the rare disease. Ehlers-Danlos Syndrome (EDS) Ehlers-Danlos…
Roger Bliss, 68-year-old pulmonary hypertension (PH) patient, was diagnosed with chronic lymphocytic leukemia and small lymphocytic lymphoma. In addition, Roger has celiac disease. He recently interviewed with Pulmonary Hypertension News.…
When Melinda Jansen van Vuuren was 13 years old, she began smoking cigarettes. For years after, Melinda smoked up to 15 cigarettes daily. Although she has since quit smoking, Melinda…
Munique Slongo is a rare disease patient diagnosed with Fabry disease. She has taken the time to share her story about what life with this diagnosis has been like. Fabry…
Often, one's own experiences inspire them to advocate for a certain cause. Abbey Hauser is an example, as she has become a voice for young adults within the rare disease…
At first, 34-year-old Chris Mee wasn’t too worried about his back pain. In fact, he kind of brushed it off – thinking it could just be sciatica, or aching from…
Amanda Gilpin, a resident of Karratha in Western Australia, noticed that her little daughter occasionally would roll her eyes in response to some of her motherly advice. At times, she…
Chloe Goodman is no stranger to tough situations. As a model and reality TV star from MTV UK's Ex on the Beach, Chloe has certainly found herself in stressful environments. But…
Rare diseases can impact many aspects of life, whether that is physical, psychological, educational, or something else. As caregivers are some of the closest people to those with rare diseases,…
The following story was told to R29 Fertility Diaries by a 34-year-old mother and her husband. The newly married couple was anxious to be parents. Even after the loss of…
When Kacey Lamphier was just a child, her father Edward passed away from a ruptured aorta. Following his death, Kacey and her family were also tested. It was during this…
Note: This is part two of a two part story. Don't forget to go back and read part one! Meghan O’Rouke, the author of the NYT best-selling book Invisible Kingdom,…
When Emily McGuyre first discovered that she was pregnant, she was thrilled. She greatly looked forward to bringing her son, Matthew, into her family. But, shares The Hawkeye, Emily learned…
This story is brought to you by our friends at HAE Junior in the Czech Republic. I think that the best gift is one that will please not only the…
Written by Denise Cardell, Shavertown, PA Jeff was diagnosed at age 9 with epilepsy. He was having seizures for at least six months before but I was told he was…
Written By Katie Ward I am not one who likes to bring attention to themselves, and you won’t ever find me talking about my struggles, issues, or anything negative. I…
In 2015, Luke and Hayleigh Tate welcomed their daughter Maisy-Leigh into the world. However, following an emergency C-section, Maisy-Leigh was taken into critical care. The doctors noticed a number of…
Written By: Teonna Woolford As a child, I never saw myself as anything but “normal.” I loved going to the playground with my friends and jumping rope. My parents encouraged…
When things in her life felt out of control, Ellen Samuels turned to poetry. This wasn’t necessarily abnormal for Ellen. As an English professor at the University of Wisconsin-Madison, Ellen…
When Rachel Matthews birthed her twin boys, Aiden and Gavin, she was ecstatic. But just a day or two after Rachel had returned home with her boys, she received a…
If you follow Major League Baseball (MLB), you’ve probably been inundated with news regarding the current lockout – and concerns over whether the season will begin on time. However, if…
Judy was diagnosed at age 45 with the rare disease IgA nephropathy in 2019. The diagnosis changed her life forever. IgA nephropathy is difficult to diagnose until it has progressed,…
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