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…
Kim Kardashian: one of the most famous women in the world. Why, you ask? I honestly don't know. But due to that fact that so many people know and seem to…
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.…
Above photo by Sandro Georgi Photography Rob has led an interesting life to say the least. He was in the navy for 20 years and has lived in Florida, Alaska, Diego…
In the video above, PW Contributor Rob tells us about working to get an acromegay diagnosis. As he describes: "Acromegaly, unfortunately, a lot of times doesn’t get diagnosed until the…
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…
My name is Rob. I’m originally from Miami, Florida, born and raised, moved out of there back in 1981 and joined the Navy; spent 20 years on active duty. Transitioned to…
Rob is a pretty incredible guy. He is a grade A techie and he is a family man. Rob is living with Acromegaly, a rare disease which is caused by a very…
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…
The FDA told Chiasma Inc. that they needed to conduct another clinical trial to gather more "sufficient data". Despite receiving a complete response letter void of any safety concerns from…
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…
Editor's Note: Kara LaFrance is an artist and graphic designer fighting acromegaly. She had a late diagnosis at 28 which led to surgery, radiation and ongoing medication therapy. Pain is a…
When someone has too much human growth hormone, or GH, which is produced by the pituitary gland, the most frequent outcome is a disorder called acromegaly. It's debilitating, painful, and disfiguring--and…
I am a huge Malcolm Gladwell fan. Published in 2013, Gladwell's David and Goliath: Underdogs, Misfits, and the Art of Battling Giants speaks to those who are at a cross roads, feeling defeated,…
Congratulations to Kristin, the winner of a $500 travel stipend to get to the 2016 Acromegaly Community Bi-annual Meeting! Patient Worthy is so excited to meet you Kristin! We are excited to…
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…
April 15th marks the deadline for the FDA to approve or deny approval for Mycapssa, a drug created by biotech company Chiasma. Mycapssa is pending approval for the treatment of…
Acromegaly.care is bringing the patient community a webinar tomorrow March 16 12:00 – 12:30 p.m. EST. What is the Webinar About? How to manage acromegaly as a chronic condition, including coping mechanisms and key…
I just read an interesting article that explains how individuals with active Acromegaly have less fat and more muscle than those without Acromegaly. They also have more GH and perhaps IGF-l (a growth factor not…
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