The experts say that 80 percent of any kind of success starts with personal participation. Therefore, all of you reading the PNA’s Newsletter are 80 percent better off in the game of life for your simplest of personal efforts. Improving your own quality of life takes participating 100 percent to the best of your ability - even when it’s not easy.
2017 marks the 25th anniversary of the founding of the Pituitary Network Association. To honor this milestone we have asked some of the physicians most central to the PNA’s evolution to reflect on the pituitary journey we’ve been on together over the past quarter century. Thank you to Drs. Asa, Ezzat and Kelly for these kind words and for your friendship and support over the decades.
Figure skating legend Scott Hamilton, a longtime friend of the PNA, has successfully battled testicular cancer and a craniopharyngioma, which has now recurred. He currently works for NBC, covering skating. He does a podcast for a web-based television network for figure skating. He does a lot of public speaking at corporate events. He owns a skating academy in Antioch, Tennessee and works with the Nashville Predators, an ice hockey team. He and his wife Tracie have four children, two birth children and two adopted from Haiti. PNA Editor Suzanne Potter recently spoke with Scott by telephone. This is a slightly condensed transcription of the interview, so you can hear Scott tell his own story.
The Pituitary Network Association continues its efforts to promote awareness for people with pituitary and hormonal disorders. Taken separately some of these disorders are rare, like Cushing's and Acromegaly. The Pituitary Network Association recognizes that combining efforts for all pituitary disorders makes a larger group with a larger reach. In honor of Rare Disease Day, February 28, 2017, the PNA is dedicated to providing knowledge to help spread awareness for the undiagnosed or misdiagnosed. The PNA has created a Pituitary Infographic designed to educate people about the role of the pituitary gland and the symptoms associated with its dysfunction. Throughout the rest of the month the PNA will be sharing this infographic on social media and on our website. Share our posts or feel free to post the infographic to your own social media. Help us spread awareness!
This month the PNA Spotlight shines on Dr. James Grua, an endocrinologist in Salt Lake City and Saint George, Utah, a Clinical Instructor of Medicine at the University of Utah, and an adjunct Assistant Professor at the University of Nevada Las Vegas. Dr. Grua earned a PhD in Steroid Biochemistry and then got his MD at the University of Utah, did his residency at the University of Wisconsin, Madison, and returned to the University of Utah for a fellowship in adult and pediatric endocrinology. He specializes in acromegaly, growth hormone deficiency, hypopituitarism, pituitary adenomas, and thyroid issues. Dr. Grua is also a member of the PNA. He agreed to answer some questions from Highlights editors. Here are his responses.
This month the PNA Medical Corner showcases an article co-written by Dr. Annamaria Colao, a longtime friend of the PNA. The study looks at Pegvisomant in the treatment of acromegaly and concludes that it is safe and effective but its use needs to be “optimized.” See the abstract below.
Pegvisomant in acromegaly: an update Giustina A, Arnaldi G, Bogazzi F, Cannavò S, Colao A, De Marinis L, De Menis E, Degli Uberti E, Giorgino F, Grottoli S, Lania AG, Maffei P, Pivonello R, Ghigo E. J Endocrinol Invest. 2017 Feb 7. doi: 10.1007/s40618-017-0614-1. [Epub ahead of print] Review. J Endocrinol Invest. 2017 Feb 7. doi: 10.1007/s40618-017-0614-1. [Epub ahead of print]
Editor’s note: Robin originally told her story in an article in Highlights a few years ago. You can read it here. Since then, she has gone through a recurrence, exploratory surgery, a clinical trial and an adrenalectomy. She has been kind enough to update her story for Highlights readers.
My name is Robin Bachkosky and at the young age of 16, I was diagnosed with Cushing’s Disease. My surgeon deemed me a successful cure, but unfortunately I had a recurrence of Cushing’s just one month before my 18th birthday, just two months before my AP exams, prom, and high school graduation, and just five months before I was supposed to be attending University of Maryland, College Park.
We are very sad to report that Jim Shelton, a pituitary patient who wrote a regular column for Highlights from 2007-2012 passed away recently after a long battle with cancer. Jim’s health first started to decline in 1996, and over the years he was diagnosed with hypothyroidism, severe allergies, asthma and sleep apnea. In 2001 he was diagnosed with pituitary failure. In 2009 he found out he had celiac/gluten-intolerance, and finally, cancer, in the form of stage four melanoma. Through it all he remained remarkably upbeat, documenting his ups and downs on Facebook and in his column for the PNA.
Several months ago Highlights ran an article about British TV host and socialiate Tara Palmer-Tomkinson, who announced last year that she had a prolactinoma. Sadly, she passed away recently at the age of 45. Her cause of death remains unclear at this point. She reportedly also struggled with autoimmune disease and had sought treatment for drug and alcohol addiction in the past. It is important to note that although prolactinomas can be life changing, they are rarely fatal. To read more Ms. Palmer-Tomkinson's untimely passing, click here for the BBC article or click here for the Daily Mail article. If you would like to learn more about prolactinomas and the symptoms of a pituitary tumors visit our website www.pituitary.org.
Knowledge is power and we believe keeping abreast of news on the research front is imperative. Each month in Highlights we feature a few of the top news stories, which you can read below. In addition, we update our website on a regular basis with the latest breaking news related to pituitary and hormonal disorders by gathering stories we think you'll be interested in from MD Linx, Medscape, MedPage Today, PubMed, Touch Endocrinology, News-Medical.net and WebMD.
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Disclaimer: PNA does not engage in the practice of medicine. It is not a medical authority, nor does it claim to have medical expertise. In all cases, PNA recommends that you consult your own physician regarding any course of treatment or medication.
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The Pituitary Patient Resource Guide Sixth Edition is now available! Be one of the first to have the most up-to-date information. The Pituitary Patient Resource Guide a one of a kind publication intended as an invaluable source of information not only for patients but also their families, physicians, and all health care providers. It contains information on symptoms, proper testing, how to get a diagnosis, and the treatment options that are available. It also includes Pituitary Network Association's patient resource listings for expert medical care.