Unfortunately, We Missed It
The physicians who left me undiagnosed said "we" missed the brain tumor. WE?! YOU, the 10 or 12 doctors I saw, missed that I had acromegaly. The doctor who finally…
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Unfortunately, We Missed It
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Why You Need to Be Aware of Your Pituitary Gland
When the pituitary gland overproduces growth hormone (GH), its usually because a pituitary adenoma has formed. An adenoma is a benign tumor that causes the patient to continue to grow. Hands and feet…
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Why You Need to Be Aware of Your Pituitary Gland
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Channel Your Inner Doctor and Help This Woman Finally Get a Diagnosis
If you're reading this, I want you to forget who you are and take on the identity of a doctor, specifically an endocrinologist... starting NOW! GO! The Case A female…
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Channel Your Inner Doctor and Help This Woman Finally Get a Diagnosis
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Mira lo que sucede cuando “Froggy” toma en serio la acromegalia
Ok, es el momento para un experimento. Coge un grupo aleatorio de gente de la calle y pegarlos en una habitación (asegúrese de preguntar en primer lugar, por favor). Pídales…
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Mira lo que sucede cuando “Froggy” toma en serio la acromegalia
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69,000 People Want New Treatments for Acromegaly NOW
If you have acromegaly, you know that available treatment options are very limited, so when Chiasma, a pharmaceutical company based in Waltham, Massachusetts, received notification that the FDA was not…
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69,000 People Want New Treatments for Acromegaly NOW
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How Does This Word Cloud Capture Your Life with Acromegaly?
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…
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How Does This Word Cloud Capture Your Life with Acromegaly?
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5 cosas perdidas con acromegalia (y cómo mejorarlos)
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 ".…
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5 cosas perdidas con acromegalia (y cómo mejorarlos)
How to Participate in Acromegaly Awareness Day
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. …
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How to Participate in Acromegaly Awareness Day
Esta enfermedad rara hace esta persona de 30 años se parezca a su abuelo… En serio!
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…
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Esta enfermedad rara hace esta persona de 30 años se parezca a su abuelo… En serio!
De todas las personas, Alex Trebek le salvó la vida a este locutor de radio
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…
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De todas las personas, Alex Trebek le salvó la vida a este locutor de radio
Editor’s Choice: The Quest for a Cure
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…
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Editor’s Choice: The Quest for a Cure
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How This Acromegaly Research Will Change Rare Disease
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…
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How This Acromegaly Research Will Change Rare Disease
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Urgent: Why You Need to Know About This Pharma Company
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…
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Urgent: Why You Need to Know About This Pharma Company
finalmente, la ciencia responde el misterio gigantesco de este hombre de 3.800 Años
"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…
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finalmente, la ciencia responde el misterio gigantesco de este hombre de 3.800 Años
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It’s a Great Day to Be Living with Acromegaly. Here’s Why.
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…
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It’s a Great Day to Be Living with Acromegaly. Here’s Why.
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What Opportunities Has Acromegaly Created for You?
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,…
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What Opportunities Has Acromegaly Created for You?
This Teacher Found Opportunities in Life with Acromegaly
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…
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This Teacher Found Opportunities in Life with Acromegaly
Acromegaly Patients at Higher Risk for Fracture Than Those with Cushing’s
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…
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Acromegaly Patients at Higher Risk for Fracture Than Those with Cushing’s
Editor’s Choice: Acromegaly Options and Living Happy with Rare Disease
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,…
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Editor’s Choice: Acromegaly Options and Living Happy with Rare Disease
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Alternative Treatments for Chronic Illness
For some people, following a conventional treatment route of medications, procedures, and more medications is the pinnacle of taking care of your health. Why bother eating better when you can just…
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Alternative Treatments for Chronic Illness
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What You Need to Know Before Opting for Pituitary Surgery
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…
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What You Need to Know Before Opting for Pituitary Surgery
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‘Two in A Million’ on TLC Represents Rare Disease
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…
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‘Two in A Million’ on TLC Represents Rare Disease
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Is the FDA Ruining Your Chances of Being Treated?
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…
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Is the FDA Ruining Your Chances of Being Treated?
Acromegaly Clinical Trial: MPOWERED
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…
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Acromegaly Clinical Trial: MPOWERED
Editor’s Choice: What Happens When You Look in the Mirror and Don’t Recognize the Person Looking Back?
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…
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Editor’s Choice: What Happens When You Look in the Mirror and Don’t Recognize the Person Looking Back?
