En el otoño de 1991, Kathy dio a luz a un hermoso niño llamado Isaac. Pero Kathy y su esposo sabían que algo no estaba bien. Isaac era su tercer…
Imagine your child is stuck at the bottom of a long transplant waiting list when he or she desperately needs a new liver. The thought is terrifying--and for many, terrifyingly…
Life just got a little easier for parents of young kids with Tyrosinemia Type I (HT-1) Raising a child with Tyrosinemia requires constant, attention to diet, a special formula, and…
A guy walks into an emergency room. He tells the doctor, “I’ve got abdominal pain. Can you help me with my (IBS)?” The doctor shakes her head and says, “No, but…
Fundraising isn’t easy. Like, it’s beyond not easy. But when the cause is right, you’ve just got to try. And the Reardons certainly have a good cause. When their son…
Nobody ever asks for a diagnosis, much less, expects it. But if you find yourself struggling to accept less-than-ideal news, it doesn't hurt to be informed. Here are five questions…
For the Rust family, 2015 was challenging—challenging in ways they never thought imaginable. Why? Because this past year, their eight-year-old son Jourdin began displaying peculiar symptoms—extreme weight loss, in particular—which started…
If you recall, here at PatientWorthy, we've talked a lot about "newborn screening." In case you missed it: What Every New Mom Should Know About Tyrosinemia What Every Pregnant Woman…
Dicen que una imagen vale más que mil palabras. Desplácese a través estas imágenes para una risita. ¿Quién no ama las siestas? Al pensar en lo imposible que era…
Carri Levy’s article about a New Jersey couple John and Amanda Miller, is one of many articles and blogs I’ve read about the Millers; it’s really struck a chord with…
Heather Smith, who is the President and Co-Founder of SCID Angels for Life Foundation, is one tough cookie. Smith has dedicated her life to helping other parents as a result…
Here are my typical evenings with Behcet's disease: I get home from work and, of course, I'm starving. But I'm also exhausted. Some days, I've planned ahead and have an easy…
Editor's note: Ehlers-Danlos syndrome research is constantly evolving. Since the publication of this article, we have covered more types that were not included in this article. To check out a…
Myasthenia Gravis (MG) is a debilitating neuromuscular disease characterized by muscle weakness that gets worse during periods of activity and improves after resting. It is sometime fatal because the muscles…
Listen up, people! This is important—especially if you’re an expectant mother! This article featuring a video in Rare Disease Report, is about an incredible mom named Amanda Miller and her son, Evan. Evan…
Usted no puede siempre estar preparado para una emergencia- que es una especie de oxímoron. Sin embargo, puede pensar en el futuro y poner en marcha un plan de emergencia.…
Chronic granulomatous disorder, or CGD, is an inherited immune disorder where certain cells (called phagocytes) are unable fight bacteria and fungi. Symptoms include swollen lymph nodes, pus-filled bumps beneath the…
Common variable immune deficiency (CVID) occurs when the body doesn't produce sufficient amounts of certain antibodies (also called immunoglobulins) in the liquid part of the blood. The result is the patient's immune…
I read an article about several people in Norfolk who were having their benefits cut by the government, and silly me, I assumed I was reading about people located in…
Living and Traveling with Primary Immunodeficiency Okay, just because you’re living with Primary Immunodeficiency (PI), doesn’t mean that you’ve got to be a little wall flower or confine yourself to…
Hey, do you love bike riding? Competitively or otherwise? And are you going to be in the Philly area around May 7th? Then you should consider taking part in the…
Susan realized there might be more to her son’s quirks—like his inability to breast-feed, the continuous projectile vomiting, and his taking an oddly long time to drink a bottle—when a doctor said…
Los pacientes con espondilitis anquilosante pueden sufrir terribles dolores de espalda. Almohadillas térmicas son una opción fácil para ayudar a aumentar el flujo de sangre y aliviar un poco el…
Eating well can be extremely expen$ive, but its vital for healthy vitals! But when you are living with autoimmune disease and other inflammatory conditions limiting (avoiding all together for many) pro-inflammatory…
Sufre de AEH? Biofeedback Reporting puede salvar su vida! Hay muchas noticias saliendo al rededor de BioRx, una empresa nacional de la especialidad farmacéutica, con sede en Cincinnati, Ohio. Se…
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