Jessie Parks is a writer for the Charleston City Paper. Her words are absolutely beautiful to behold. The reason she started her column? Her mother. who was diagnosed with Waldenstrom macroglobulinemia…
8-year-old Carter Anderson has PKAN. He’s only had his official diagnosis for about a year, as his parents were first told he had cerebral palsy. Since Pantothenate Kinase-Associated Neurodegeneration (PKAN)…
Have you ever just felt so desperate for something that you jump into a decision, without thinking it through completely or weighing the possible repercussions of your decision? It had…
Spinal muscular atrophy (SMA) occurs when the immune system attacks motor neurons, resulting in the muscles surrounding the spinal cord atrophying (degenerating). SMA is an inherited disorder that disables the…
Achondroplasia is one of those illnesses that you can’t hide. And everyone is going to have a different responses to it. Some ignore it, some will ask questions, and others…
It is every woman's dream. After nine months of waiting, anticipating, dreaming, and expectancy, Jillian Johnson’s first baby was finally in her hands. Her new bundle of joy, Landon, was…
Many sisters may play pranks or bicker with each other often. According to ABC 11 News, Twelve-year-old Natalia and fourteen-year-old Nyasia Yarrell are no different. One minute they are mad at…
You're happily tucking your toddler in for her afternoon nap when she starts to panic. Where's her favorite blankie and stuffed penguin? A peaceful nap won't occur without it! With…
At 5 years old, Holton Jones was diagnosed with ROHHAD, or rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation. According to the Pensacola News Journal, his parents knew something…
In collaboration with the Hereditary Neuropathy Foundation (HNF), Patient Worthy held an essay contest for tickets to a Charcot-Marie-Tooth disease event. We asked members of the Charcot-Marie Tooth (CMT) community to tell…
In Toledo, Ohio an 8-year-old child is one of 100,000 Americans who is affected by sickle cell anemia. According to WNDU, Terrilonnae Chatman has sickle cell anemia, which can cause red…
Elizabeth couldn’t speak. She wasn’t expected to ever utter a word. She couldn’t read. She struggled to make trips outside of the house. Certain smells and loud sounds bothered her.…
Alexander Davis è di Tipton, Indiana. Ha vissuto con atrofia muscolare spinale (SMA). SMA lo impedisce di muoversi molto e non è in grado di camminare. Pertanto, ha bisogno di…
Alexander Davis est originaire de Tipton, Indiana. Il a vécu avec une atrophie musculaire spinale (SMA). SMA l'empêche de bouger beaucoup et il est incapable de marcher. Par conséquent, il…
Fino a poco tempo fa, il termine ROHHAD non significava nulla. Ma poi ho sentito parlare di un bambino canadese di 11 anni chiamato Denika Bailey che ha questo raro…
L'emiplegia si verifica normalmente durante la gravidanza, o molto rapidamente dopo la nascita. I genitori sono fortunati ad avere alcuni momenti con il loro bambino prima che questa condizione cambia…
L'hémiplégie se produit normalement pendant la grossesse, ou très rapidement après la naissance. Les parents ont de la chance d'avoir quelques instants avec leur enfant avant que cette condition ne…
Come mid-January, eager and anxious girls flood the roads connecting all of the sororities at my school for recruitment, in perhaps what is the most important week of their first…
I’ll admit that I ran wild as a kid. I never got into trouble—you know what I mean, I was never arrested, no animals were harmed, and no injuries were…
Everybody wants to win. Winning gives a certain pride and joy that keeps us wanting more. Winning becomes a motivating factor for a person to do her best so she…
Once upon a time there were three young brothers, and SPOILER ALERT- this part of the story, unfortunately, does not have a happy ending. Each brother suffered: Each had chronic…
Hey, do you guys remember that Mark Wahlberg movie that came out not long ago? You know, the one where he’s a cop? No no, not that one. The serious…
My freshman year of high school, I began to get strange, red spots on my body. They initially developed on my arms, but within a couple of days, they had…
Peter Sadler has been raising funds to support the British Lung Foundation, which funds sarcoidosis research. The 42-year-old recently participated in the Bath-Half marathon. He's been on a mission to run in the…
There is a must-read for more inspiration about living with sickle cell anemia (SCA) – a young woman’s blog, but not just any blog. She’s a DIVA (as in, absolutely…
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