Describing your acromegaly isn’t easy. I’m sure you’ve been met with enough blank stares or uncomfortable jokes about “giants” to last a lifetime. Fact is, sometimes people will not get…
Cuando se tiene una enfermedad rara, las personas están obligados a darle la mirada. Usted sabe que el uno. Se dice: "Oh, bendita tu corazón; que ha perdido tanto ".…
Hello I’m Kara, a woman who was finally, properly diagnosed 10 years ago with acromegaly. I still deal with residual issues that started 20 years ago on a daily basis. …
Para los veinteañeros, ¿cómo se sentiría si estuviera viendo rápidamente su edad cuerpo? ¿Y si se miraba como una persona de 80 años de edad, por su treinta cumpleaños? O…
Ir en su programa de radio promedio sitio web a la salida de la BIOS de sus anfitriones favoritos, poniendo una cara de esos tonos frescos cobardes que escuchas en…
Welcome Back Patient Worthians! Acromegaly patients will be interested to see some new research happening in the name of rare disease. Speaking of research, there is a Castleman's event coming up…
Everyone wants to know the secret to living longer. The Fountain of Youth. The Elixir of Life. The Philosopher's Stone. Well, researchers may have found the answer and they have…
Here's a riddle to start your day: What do acromegaly, Cushing's disease, and epidermolysis bullosa have in common? If you guessed that they all have treatments owned by a small pharma…
"characteristicas de una frente protuberante una mandibula cuadrada encontrados en un esqueleto de 3,800 años de edad" fue reportado por Western Digs. Cada característica apunta a una causa probable: la…
For anyone living with acromegaly, which substantially increases growth hormone, it shouldn't be a secret that the condition is hard to treat. The gold standard for first-line treatment has been…
It's easy to identify the times when a medical condition works against us. In the case of acromegaly, people may experience: fatigue, muscle weakness, severe pain, limited mobility, impaired vision,…
On March 13, 2016, the SunHerald of Gulfport, Mississippi, announced a contest: school choirs could audition to perform with the rock band Foreigner. And in addition to that opportunity, the chosen…
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,…
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…
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,…
Anyone living with acromegaly should understand their treatment options and why they're being proposed. The UCLA Pituitary Tumor Program has a video outlining some of the treatment considerations for acromegaly. It's…
Do you know how rare diseases are classified as such in the United States? If a disease affects 200,000 people or fewer, it is considered "rare." Acromegaly, cystinosis, and Gaucher…
The FDA: created to protect public health consumers by assuring the safety, efficacy, and security of medications, devices, food, cosmetics, and other products. No, I did come up with that…
Chiasma is conducting another clinical trial for Acromegaly patients, the MPOWERED study. “It is designed to compare the safety and effectiveness of an investigational new drug product, octreotide capsules, to…
Happy American Independence Day Weekend Patient Worthy! What happens when you look into the mirror and the person staring back isn't who you were expecting? One word: acromegaly. Do you or…
I would look into the mirror each day and not recognize the face staring back at me. It wasn’t that I was getting older or that I had gained some…
Photo by Sandro Georgi Photography "My hope is that my condition finds cures so that other people don’t have to go through it and their kids don’t have to see…
Photo by Sandro Georgi Photography As a parent your main job is to protect your child from the terrible things in the world, but of course you know that one…
Happy Almost-Father's Day Patient Worthians! This week, we have some important information on the rare disease myasthenia gravis in the spirit of June being it's awareness month. Also, have you ever…
Still not feeling well? You are not alone! The new, and validated survey instrument on quality of life for patients being treated for acromegaly, developed by Dr. Maria Fleseriu and…
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