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…
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…
Patient Worthy had the privilege of attending the Acromegaly Community Conference in Chicago April 29th –May 1st. We met some incredible people (stories to come), learned some valuable information (risks of…
Happy Friday Patient Worthians! This week, we have some riveting stories by three PW contributors. Firstly, we have Alexis battling Lyme disease for 8 years and a surprising ending to Part 1…
Part of the symptoms, when you go back online and you look at some of the classic people that have acromegaly, the one that pops immediately is Andre the Giant.…
Endocrinologists are continuing to debate the possible link between acromegaly and cancer, but have not made an absolute connection--if anything, researchers have noted great inconsistencies in their findings. While that…
So my endocrinologist calls me and tells me I have acromegaly. First thing is she calls me and tells me I have this disease that I’ve never heard about before.…
Just weeks after the FDA required more data prior to approving an oral form of Octreotide, proposed by Chiasma Pharmaceuticals, a British pharmaceutical and device company, Glide (not the dental…
Concern versus Worry We teamed up with Patient Worthy Acromegaly Contributor Rob to talk a little bit about two "conditions" that may not be considered "actual" diagnosis' by the medical community.…
Happy Almost Mother's Day Patient Worthians! This week is PACKED with announcements. First of all, it's Lyme disease Awareness Month, Cystinosis Awareness Month, Cystic Fibrosis Awareness Month, and Behcet's Awareness…
Congrats Patient Worthians! You made it to Friday! This week we have some interesting Myasthenia Gravis pain remedies. Additionally, we have a pretty sweet Acromegaly poster designed by one of our…
Happy Passover Weekend Patient Worthians! This week Acromegaly is taking over! It's no secret that rare diseases go misdiagnosed, so in Biblical times, it's safe to say this disease when UNdiagnosed for…
It's officially April and it's officially the WEEKEND! PW Contributor Alexis writes of how her experience with PTSD relates to going through the process of diagnosis and treatment of chronic…
¿Y ahora qué? Llegaste al doctor para hacerte un chequeo y sales con un diagnostico que cambia tu vida entera. Sea, Distonía, Acromegalia, Angioedema Hereditario (AEH) o la enfermedad de…
Acromegaly, also called gigantism, is diagnosed in only 1 in 20,000 people in the United States. In 95% of cases, it's caused by a benign tumor on the pituitary gland called an adenoma. Acromegaly causes…
2016 Acromegaly Community Bi-annual Meeting, April 29-May 1st Mark your calendars, reserve your hotel room and put a price alert on Kayak.com to attend the Bi-Annual conference of the Acromegaly Community.…
Lo admito; De las docenas de veces que he visto a la película "The Princess Bride", nunca me detuve a pensar en el actor Andre Roussimoff. Él es el tipo…
You know what they say about a guy with big feet... ...he's also got a BIG dictionary, ya know, since he's probably had to research acromegaly. Okay, maybe they don't say…
At 23, Jessie Brenholt should be busy planning the rest of her life, such as marriage and having a family. Instead, the 2012 graduate of Le Cordon Bleu College of Culinary…
Ok, it’s time for an experiment. Grab a random group of people off the street and stick them in a room (make sure to ask first, please). Ask them to…
If you’re one of the small number of people living with acromegaly symptoms today (an estimated 60 out of every million people worldwide), we’ve got some good news for you.…
Twenty-somethings, how would you feel if you were quickly watching your body age? And what if you looked like an 80-year-old by your thirtieth birthday? Or how about this: What…
When you’ve got a rare disease, people are bound to give you The Look. You know the one. It says: “Oh, bless your heart; you’ve lost so much.” And you…
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