Today we continue our mission to highlight patient stories by sharing Michelle Whipple Williams’s amazing blog. Michelle is a participant in a protocol at the National Institutes of Health, and writes beautifully descriptive pieces about her time there, as well as her experiences as a patient with a rare disease.
Category: Featured This Week
Pheochromocytoma: The Last Episode
Filmmaker Attiya Khan contacted the Pheo Para Alliance just before Rare Disease Day last year to talk about her diagnosis of pheochromocytoma. Naturally, we asked her if she’d consider participating in our annual NET Cancer Day PSA. To our great delight, she said yes!
Attiya’s video made a great impression on World NET Cancer Day 2017, striking a chord not just among those with pheo/para, but among many throughout the greater NET Cancer community. While we wait to hear whether a much-anticipated longer movie materializes, we’d like to invite out visitors to take another look at her brave and unflinching short film, Pheochromocytoma: The Last Episode
Featured This Week: Catecholamines
If you’re a pheo patient, or if you know one, you’ve probably heard a lot about catecholamines. But, do you know what they are, and how they relate to pheochromocytoma?
During last November’s Pheochromocytoma and Paraganglioma 2015 International Conference, Dr. Vitaly Kantorovich presented up-to-date information on catecholamines, and why both their levels and biochemical composition are important to identification of pheochromocytoma and the genetic mutations associated with these tumors.
The conference at which Dr. Kantorovich spoke was organized by the Pheo Para Troopers, who have this video and many others from the conference hosted on their site. The Pheo Para Troopers is the largest patient-centered organization dealing exclusively with pheochromocytoma and paraganglioma, and is a wonderful resource for patients and their families, as well as healthcare professionals.
The videos for the conference are exclusively supported by the Firefox browser.
Featured This Week: Modern Imaging
There has been growing discussion regarding the most effective way to image neuroendocrine tumors, including pheos and paras, which culminated with an announcement on June 1st that the United States Food and Drug Administration (FDA) has approved the use of Netspot. Netspot is a kit designed to deliver a single dose of radioactive diagnostic agent Ga-68 DOTA-TATE to patients via injection during positron emission tomography (PET) imaging.
Dr. Jorge Carasquillo spoke to attendees at the Pheochromocytoma and Paraganglioma 2015 International Conference about imaging techniques in his presentation on Modern Imaging. Dr. Carasquillo’s illuminating talk presented ample evidence for the superiority of PET imaging used in conjunction with Ga-68 DOTA-compounds when looking for pheochromocytomas and paragangliomas.
We’d like to append a special note to radiologists and patients reading this: Because of the great value of these scans to patients, we are currently in the process of compiling a global list of facilities which offer Ga-68 DOTA PET imaging. We are very interested in hearing from providers who offer them, and also from patients who have received them. Please contact us with the details, and be sure to leave information on how we can reach you for more information.
This video is hosted by the Pheo Para Troopers, who also organized the conference from which it was taken. The Pheo Para Troopers is the largest patient-centered organization dealing exclusively with pheochromocytoma and paraganglioma, and is a wonderful resource for both patients and healthcare professionals.
The videos for the conference are exclusively supported by the Firefox browser.
Featured This Week: What Every Primary Doctor Needs to Know About Pheochromocytoma and Paraganglioma
If we had to list posts we’d like to see spread far and wide, Dr. Ruban Dhaliwal’s November presentation at the Pheochromocytoma and Paraganglioma 2015 International Conference would be one of our top picks. Primary care physicians are usually the first to encounter the symptoms of these tumors, and What Every Primary Doctor Needs to Know About Pheochromocytoma and Paraganglioma provides good basic information on what to look for, how to properly conduct testing, and when to pull in colleagues from specialized areas of practice.
As with all the links we will be posting, we encourage any patients reading this to share with their doctors. If you’re a medical professional, we hope that you will take the time to listen to the presentations and view the slides.
Please note: the videos for the conference are supported by the Firefox browser.
Thanks to the Pheo Para Troopers for their kind permission to re-post links to their videos from the conference.
Featured This Week: Pediatric Management of Pheochromocytoma
Since the NIH’s recent study linking pediatric pheochromocytoma to ADHD is getting a lot of buzz, we decided to kick off the first installment of our new miniseries “Featured This Week” with Dr. Jonathan Riddell’s discussion on Pediatric Management of Pheochromocytoma. Dr. Riddell was one of the speakers at the Pheochromocytoma and Paraganglioma 2015 International Conference, held at Upstate University in Syracuse, NY in November, 2015.
We’d like to again offer many thanks to the Pheo Para Troopers for putting together such an amazingly informative event for patients, and for their kind permission to re-post links to their videos from the conference.
One final technical note: the videos for the conference are supported by the Firefox browser.
Remembering Lori
Our condolences to Erin, Julie, and their family. We are sad to report that pheo has taken another life all too soon. Stories like Lori Kozempel’s emphasize the painful reality of pheochromocytoma; we know too little and we must help patients and medical professionals learn how to diagnose early.
Julie Yankanich, Lori’s daughter, is telling her story and raising awareness with the help of her daughter, Erin. Please take a moment and read about Lori and Julie.
#NET #NETcancer #neuroendocrine #incaliance
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