With the lead line of “There is more to my acromegaly than just numbers on a page” comes a new informational website from the Chiesi Global Rare Diseases patient support group. Rethink Acromegaly is a
Acromegaly
Acromegaly is usually caused by a noncancerous tumor. Middle-aged adults are most commonly affected. Symptoms include enlargement of the face, hands, and feet. Prompt treatment is needed to avoid serious illness. Drugs can reduce the effects of growth hormone. If needed, surgery and radiation may be used to remove tumor cells.
New York Times story underlines pituitary patients’ struggles with delayed diagnosis.
July 17, 2018
A recent New York Times Sunday Magazine article by Lisa Sanders M.D. featured PWN cofounder Lewis Blevins, M.D. and the experiences of one of his patients with an acromegaly diagnosis. The article “The Patient Had
Insurance issues and clinical trials
July 6, 2018
From Jill Sisco, patient advocate, president of the acromegaly community and PWN contributor comes this commentary on insurance out-of-pocket charges and an update on acromegaly clinical trials. As a patient leader, that runs a
Acromegaly that is difficult to determine
June 28, 2018
Listen to a discussion of Acromegaly cases that, for a variety of clinical and biochemical reasons, are difficult to discern. Learn about people with definite acromegaly but negative MRI studies. Why are some microadenomas
Acromegaly portraits: A photo essay by Spain’s acromegaly community
June 7, 2018
In a fantastic photo exposition from our friends at the Spanish Acromegaly Association, Raquel Ciriza, and her team illustrate this point with stunning, beautiful visuals of people with Acromegaly. We don’t have to portrait Bond Villains,
Arthritis and acromegaly
March 29, 2018
Arthropathy is one of the most insidious conditions that can affect people with acromegaly often with challenging quality of life issues. Bone and joint issues are very common. In this enlightening podcast, Dr. Lewis Blevins
Dan’s journey
December 30, 2017
I was fortunate to cross paths with Dan Jeffries a few weeks ago and chat with him about his journey with Acromegaly and a few other things. But I’ll let him tell you all about
Sleep apnea and acromegaly
December 19, 2017
Studies suggest that sleep apnea is a very common and potentially dangerous condition for people with acromegaly if not properly treated. Today’s podcast presents an engaging look at sleep apnea. PWN cofounders Dr. Lewis Blevins and Jorge
HealthWell Foundation Launches New Fund to Provide Financial Assistance to Medicare Patients Living with Acromegaly
December 14, 2017
The HealthWell Foundation®, an independent non-profit that provides a financial lifeline for inadequately insured Americans, announced recently it has launched a new fund to provide copayment and premium assistance to Medicare patients living with acromegaly.
Sleep Apnea: nothing to snore about
December 8, 2017
PWN is developing a series of podcasts dedicated to sleep apnea, a very common related condition in people with active or controlled acromegaly. Stay tuned for an engaging series of doctor-patient podcasts where we’ll discuss
Looking into the world of new drug discovery and development
November 14, 2017
A conversation with Dr. Scott Struthers, Founder, and CEO of Crinetics Pharmaceutical. These are exciting times in the world of endocrine drug discovery and development, particularly for Acromegaly and Cushing’s patients. In today’s podcast we
More form the Canadian National Acromegaly Conference
November 7, 2017
Patient advocates and PWN panel Q & A session: Santino Santino Matrundola, Dan Jeffries and JD Faccinetti answer questions from the floor about living with acromegaly, advocacy, memoir writing and more. The Canadian National Acromegaly patient
Anyone can get acromegaly: awareness is key
October 30, 2017
Here’s how you can get involved: Awareness is important because it is through awareness that we can influence change. Awareness can have a critical impact on the amount of time it takes to diagnose the