Shari Bender’s life didn’t exactly turn out the way she planned, but in reality, whose ever does? Bender’s daughter was born with hemophilia, a bleeding disorder that changed the lives…
Tahnie tenia 16 meses de edad cuando fue diagnosticada con la enfermedad rara de cistinosis. Sus padres fueron informados que muy probablemente no viviría más allá de la edad de…
When you have a rare disease, like dysautonomia, the walls of your world can constrict pretty quickly. Chances are good that you’d never even heard of your disease before your…
With less than 200,000 cases per year, Neonatal Respiratory Distress Syndrome (or Neonatal RDS) occurs when a child's lungs have not fully developed and are lacking the substance surfactant, which helps…
If you live in America, the first 100 articles during any basic Google search will be Western-centric. I’m not really condemning this. It’s expected that the media's focus will lean more toward…
Lisa is living with Myasthenia Gravis, you can read more about her journey here. Was this true for you too? Once you fully accept your diagnosis you can focus your…
Netflix recently released an original dark comedy that features a young boy from the UK with Duchenne Muscular Dystrophy whose caregiver (played by Paul Rudd) is new at his job and…
When one myasthenia gravis (MG) patient musters the strength to get out of the house, she often receives the same compliment: “You look great today.” But because she feels so…
Erin no se puede recuperar una vez en su vida cuando ella no estaba enfermo. Desde la edad de cuatro años, ella ha tenido una sucesión interminable de infecciones, sinusitis,…
People with treatment-resistant epilepsy (TRE)—and especially parents of children with the severe form of epilepsy called Lennox-Gastaut syndrome—can easily become discouraged as they speed through a growing list of anti-seizure…
Paroxysmal nocturnal hemoglobinuria, or PNH, is a hematopoietic stem cell disorder. Hematopoietic stem cells are developed in the bone marrow, where they grow and eventually develop into red blood cells, white…
The Ice Bucket Challenge was a huge success for raising awareness and funding for ALS research. But this year, there is a new fundraising effort for the debilitating, neurodegenerative disease called…
Don't lose your optimism or courage and don't ever give up. Illness isn't easy, but don't let it steal from you.
Press release - 10th July 2016 PW Partner: Breathe With Me, Strawfie Challenge When Danielle Cartwright filmed her daughter Talia May taking her medication and proudly posted the video online,…
Having chronic Lyme pretty much means I am chronically fatigued, choking down so much food to try and gain energy from it, to no avail. But, I have gotten to…
Usted sabe que esos anuncios, "¿Qué haría usted para una barra de Klondike?" Piense acerca de eso, pero en vez de conseguir el helado se llega a jugar béisbol. ¿Qué…
You may not recognize what ALS (Amyotrophic lateral sclerosis) is, you may recognize it as Lou Gherig's Disease, or that disease that Stephen Hawking has. It is a terrible disease that…
You may not know this but Shakespeare's signature is super rare, there are only six known authentic signatures of his in the world. You know what else is rare? People…
A lot of us fight Lyme the only ways that are available to us, be it antibiotics, homepathy or other alternative routes. However, when a kid has chronic Lyme, he…
With chronic illness, rare disease, and life in general, there are always going to be rough patches where you start to lose hope. It's impossible to keep a positive, upbeat…
Maeve Rochford was once told she only had two years to live—nearly two decades ago. Maeve was diagnosed with membranoproliferative glomerulonephritis (MPGN), a kidney disorder, when she was 19. She is no stranger to…
Wow! This is a pretty cool invention to help make life a little easier for people with disabilities. A start-up company called Neurable is working on a technology called BCI,…
Mamá cualquiera entrega el don extraordinario de la Vida Brookwater, Australia. Corinne Heapy, es una dedicada madre de dos hijos, sabe de primera mano, lo que es dar el…
If 70 million people are suffering from dysautonomia, why is the medical community so clueless when it comes to diagnosing this disorder? Dysautonomia occurs when the autonomic immune nervous system--…
Mycosis Fungoides is a rare type of lymphoma cancer. Most often, it causes skin lesions called patches that are flat, scaly, pink or red areas on the skin that can be…
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