Evaluation and Management of Primary Hyperaldosteronism

Interesting write up about Primary hyperaldosteronism being recognized as an increasingly prevalent cause of hypertension by the NCBI for the US National Library of Medicine, National Institutes of Health.

https://www.ncbi.nlm.nih.gov/pubmed/31255203

New research on the surgical procedure to treat Conns : Thermal ablation

I just read an interesting article in Medical Xpress.com where researchers are looking into a new alternative way to surgically remove the adenoma that causes Conn's through the use of electromagnetic waves (the technique is called thermal ablation). It's worth the read even though it's in the nascent phase of research.

https://medicalxpress.com/news/2019-04-thermal-ablation-method-adenoma.html

Researchers discover pump-induced disease mutation in Primary Aldosterone patients

This is a very insightful article that may explain why certain people get hyperaldosteronism-- the result of specific mutations of the Na/K pump found inside the tumors that induce primary aldosteronism (Conn's syndrome).

"Dylan J. Meyer, a TTUHSC Ph.D. candidate, along with his advisor, Pablo Artigas, Ph.D., associate professor at the TTUHSC Department of Cell Physiology and Molecular Biophysics, presented, in collaboration with Craig Gatto, Ph.D., at Illinois State University, a study of the functional effects of specific mutations of the Na/K pump found in tumors that induce primary aldosteronism (Conn's syndrome)." 

Read the full article: https://medicalxpress.com/news/2017-10-pump-induced-disease-underlying-molecular-mechanism.html

National Rare Disease Day, February 29, 2016

I received an email from a man I've never met whose wife Heather suffered from a rare disease: mesothelioma cancer. She is a survivor and started a blog chronicling her disease and recovery, just like I did on this blog. He said he found me through another site which is a small miracle considering hyperaldosteronism is nothing like mesothelioma other than its rareness. We exchanged some emails and he introduced me to the National Rare Disease website, asking me if I would post something to honor its special day, February 29. I wholeheartedly agreed. 

The National Rare Disease is website that explains what a rare disease is and has a database of good information, including a personal stories page. http://www.rarediseaseday.org/article/get-involved. 

The Get Involved page allows you to share your very own story which in turn could help others who may not know what they have or just received a recent diagnosis and are just starting the arduous process of testing.

Heather Von St. James is a survivor of her rare form of cancer, just like many of you who visit this website. We did not have cancer like she did, but we suffered from a life threatening disease that can easily kill if left untreated. The thing about having a rare disease is the too often lack of research and information for patients who want to educate themselves. Knowledge is power and as a patient, advocacy is crucial. Getting a scary diagnosis is one thing, having a rare disease where there is conflicting and doomsday information on the internet is another. The many and complicated steps Heather had to take are not unlike the steps Conn's patients take to ensure diagnosis and determine if surgery or other forms of therapy is an option. 

To read about Heather's journey, visit: http://www.mesothelioma.com/heather/survivor/#intro

I plan to post the link to the National Rare Disease website to my Facebook page as well. We are fortunate to have new avenues like this to spread helpful information. Hopefully, this site will encourage people to share and meet new friends who can help or be supportive. The more we connect, they more we help the next guy, even if they have other diseases, it still creates a dialogue which gets passed on socially more than we realize.

For my Conn's readers, please continue to contact me for questions on testing, surgery and life after one adrenal. I've met some amazing people who have overcome a lot of struggle and survived the hormone wars. In the meantime, please visit the National Rare Disease website and remember change is happening, The more sites like this that are started, the more our own rare disease has a chance of becoming more visible and mainstream (which I thoroughly believe it already is) and get the attention is deserves.

Thank you Cameron Von St. James for reaching out and tell Heather she is a warrior we could all look up to.

Thanks for supporting this blog!

Abiquiu, NM

It's hard to believe its been almost seven years since I was diagnosed with Conn's. Despite surviving the disease and having surgery in 2009, I am still committed to informing and updating readers about the stages of testing required for a proper diagnosis and treatment/recovery plan on this blog. I also find it crucial to share with readers updates on my post-adrenalectomy life and encourage others to share their stories as well.

For me, the surgery was a success, but if you read this blog regularly, my life has changed  a lot since surgery-- my hypoglycemia became severe, making things a little more complicated. Stress is still my #1 enemy, but I continue to learn new ways to take care of my delicate system with supplements, acupuncture and a new way of eating-- and living. It's been frustrating and scary, but everything seems to make sense after finding this out. My doctors have been monitoring my pre-diabetic issues for a very long time, even before I had Conn's, and after some really scary episodes complete with erratic behavior and several instances of passing out, finding out why has helped me understand why things have been so off for so long. Even after surgery. But more on that in another blog.

Thank you for writing in and posting your comments. People from all over the world have contacted me to ask questions and share their experiences which is so helpful. Some folks have had easier experiences with Conn's, but many have dealt with the darker side of this disease that includes a multitude of side effects many websites continue to unfortunately omit. It helps others who just found out they have Conn's to see what they can expect, so keep the dialogue going! This blog's purpose is to inform and support and whatever we can do to help the next guy, we should do.

Maybe we are getting closer to getting the attention Conn's patients desperately deserve. I was recently interviewed by a health writer in NYC who wanted to pitch my story to the Dr. Oz Magazine, which is something I think would help A LOT of people out there. Here's hoping they take it. I will keep you posted. Who knows, maybe they will put a group of us on the show where we could share our stories, thereby helping others who live in fear, worried about their own misunderstood symptoms.

Wouldn't that be great?

Interesting article about Hyperaldosteronism in obesity related hypertension

BOSTON — At the Cardiometabolic Health Congress, Colleen M. Majewski, MD, discussed the link between elevated aldosterone and obesity-related hypertension, and how knowledge of this association factors into the management of patients.

Please click on link to read entire article.

http://www.healio.com/cardiology/chd-prevention/news/online/%7B8f2d643e-bf7c-4fd2-a9fc-27ce66076206%7D/expert-examines-contribution-of-aldosterone-in-obesity-related-hypertension?sc_trk=internalsearch

N.A.D.F. needs stories about adrenal crisis for Lobbying effort for better EMT training

As a member of the National Adrenal Disease Foundation (NADF), I receive emails each week regarding updates and issues for people suffering from adrenal diseases (Cushings, Conn's, Addison's).

Today, I received a request for stories about adrenal insufficiency or crisis that precipitates patients to go to the hospital or emergency room. The goal of the study is to collect stories to share to legislature to create a better protocol for E.M.T. Many E.M.T. workers are not trained or familiar with the signs of adrenal crisis. This is a good thing they are doing and if any of you have a good story to share, Karen at NADF, is the person you can contact. Her email is: karenf@caresfoundation.org

Many people have contacted me on this site to share their health scares, especially in the early stages of Conn's when potassium levels became too dangerously low, or high blood pressure caused heart attacks or other problems. As well, anyone who has gone to the hospital with severe fatigue, numbness of limbs, brain fog, confusion or polyuria issues that has already been diagnosed with the Conn's Disease, should contact them.