Ahora en su quinto año, un equipo de ciclistas altamente motivados de Sandpoint ha pedaleado una vez más unos 3.000 millas arduas través de los Estados Unidos, participando en la…
Patient Worthy had the privilege of speaking with Vicky, who shared her story of being diagnosed and living with sarcoidosis. My case was outside the ‘normal’ perimeters because I was…
Si su médico le ha dicho que se podía comer pizza, carne y otros alimentos ricos en grasa al día es probable que registrarse para que la prescripción inmediatamente. Pero…
Para una enfermedad que tiene tan poca atención prestada a ella, hay un buen número de personas que quieren llevarlo a la vanguardia en la forma de una exposición de…
No es común que las enfermedades raras cruce con la cultura pop, pero cuando lo hacen, vale la pena sintonizar. Este verano, espectáculo de Lifetime Television, "The Balancing Act", contó…
Welcome to this week's Editor's Choice! When you have a rare disease like dystonia, you come across a ton of different reactions from people in regards to your illness. One…
dedo mutilado? contusión ósea severa? Fractura en la espalda? No, esto no es un catálogo de las lesiones del club de la lucha, éstas son algunas lesiones reales el Miami…
With rare disease, everyone is familiar with the concept that early diagnosis typically means better patient outcomes. Such is the case with acromegaly. According to a recent article in healio,…
Kallman syndrome is a condition in which puberty is delayed or completely absent from the individual. According to the NIH, it effects just one out of every 10,000 to 86,000…
Hipercolesterolemia familiar heterocigótica (o HeFH), nunca has oído hablar de él? Es un bocado. Es también una condición que hace que los niveles de colesterol de alta peligrosidad y, si…
Carcinoid tumors are rare and most often occur in the lungs and intestinal tract. When they secrete chemicals into the blood stream, the follow symptoms may occur: skin flushing, facial…
This summer, while visiting friends in Chicago, I met the most amazing woman Angie. She was out for the first time since she had her beautiful daughter, so we looked…
According to a recent study, patients who were previously treated for acromegaly were at an increased risk for bone fractures after being treated with growth hormones for six years. Scientists at VU…
¿Alguna vez has oído hablar de la deficiencia de Glut1? Basada en una historia ofrecida en News-Medical, y no tenían los padres de su hija diagnosticadaa los 4 años de…
My brain is CRAZY! At least, that’s the way I feel. I cannot explain how infuriating it is to have what I refer to as, a dystonia brain! So, what’s…
When I was 14 or 15 years old, my father was deployed and the family was a little anxious say the least. That's why, when I woke up one spring…
As someone who went through long-term antibiotic treatment, I can speak to the tremendous financial strain it had on my family. Well, if you live in Massachusetts, new legislative action…
Glucosa. Esto significa que el azúcar, ¿verdad? Está en su cuerpo, ¿verdad? Pero, ¿cómo se transportan y cómo sabe que su cuerpo la cantidad que necesita para el transporte? Lo…
Last night as part of my boyfriend’s birthday gift, we attended a St. Paul Saints’ baseball game in downtown St. Paul, Minnesota. Anyone who knows me even a little bit…
Because I have chronic inflammation due to Lyme disease and POTS, I'm constantly taking supplements and eating the right food to reduce that inflammation. Yes, that means I have to…
Si usted es una de las pocas personas en EE.UU. que viven con el síndrome de quilomicronemia familiar (FCS por sus siglas en ingles), lo más probable es que usted…
Welcome to this week's Editor's Choice! Those with acromegaly have a few options for treatment. Pituitary surgery and clinical trials for new drugs are two of these acromegaly treatment options,…
Jake Krahe, un joven de Montville Township, Ohio, ha estado viviendo con una enfermedad rara desde que tenía 19 meses de edad informa 19 action news. El diagnóstico específico es la…
If you are a rare disease sufferer in the midwest, then you should know about the US Pain Foundation's Pain Treatment Expo in August. So why go? You may find…
Over the last eight months, I've been in post-treatment Lyme life, allowing me to be more social. With that comes the dreaded social interactions where I have to explain why I'm tired, am…
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