Patient Stories

Primary aldosteronism affects men and women. It is estimated that the majority of them require medical treatment, and that 30% of patients can be treated surgically. So far, most stories submitted to the Foundation are those of female patients, and most underwent adrenalectomy. These proportions are not representative of the actual distribution of hyperaldosteronism in the general population. However, all stories accurately depict the lived experiences of patients with the disease, particularly with regard to signs and symptoms, standards of care, and the impact on patients’ life of diagnosis and treatment that are delayed for years, if not decades.

Meet Tammie

Diagnosis:
Unilateral disease
Years to diagnosis: > 20

For nearly 20 years, I struggled with mysterious symptoms that seemed impossible to diagnose. Running had always been my source of strength and resilience. Something wasn’t right, my health seemed to be working against me. Persistent headaches, uncontrollable high blood pressure, heart palpitations, swelling, and excessive sweating made it increasingly difficult to get through my days, let alone train and compete.

Tammie's full story ...

Meet Jenny

Diagnosis:
Unilateral disease
Years to diagnosis: > 10

I began having high blood pressure (HBP) in my mid-30's, for no apparent reason. I did not smoke or drink a lot of alcohol, was not overweight, and worked out regularly. I was prescribed various blood pressure medications that did nothing. I asked doctors multiple times if there could be an underlying cause and was told “no.” In my 40's, I began to have periods of extreme weakness where I felt I was going to pass out.

Jenny's full story ...

Meet David

Diagnosis:
Bilateral disease
Years to diagnosis: > 20

Upon reflection, I had hypertension in my early twenties. As I progressed into my thirties it became more difficult to control. I was placed on two medications including a diuretic. Time passed and the dosages were increased to control my blood pressure. At the same time my potassium started to plummet. On April 5, 2006, and I remember that date well, my potassium went so low I thought I was having a heart attack.

David's full story ...

Meet Varun

Diagnosis:
Bilateral disease
Years to diagnosis: > 20

Living with undiagnosed health issues can be an incredibly challenging and frustrating experience. In my case, the journey began at the age of 17 when I developed hypertension that proved resistant to conventional treatment. What followed was a rollercoaster ride of doctors, tests, misdiagnoses, uncertainties, setbacks, and ultimately, a long-awaited diagnosis of primary aldosteronism.

Varun's full story ...

Meet William

Diagnosis:
Unilateral disease
Years to diagnosis: > 20

I started having high BP around 1997, and developed rapid, pounding heartbeat, with severe, unprompted anxiety attacks, brain-fog, weakness, fatigue, muscle cramps, severe head and neck pain. Progressive numbness began in my right hand. I became so weak and my heart rate became so volatile that I was barely able to move around the house, spending almost all of my time sitting down.

William's full story ...

Meet Kitty

Diagnosis:
Unilateral disease
Years to diagnosis: > 10

Before meeting the endocrinologist who eventually diagnosed me, I had never heard of primary aldosteronism. I was shocked to hear I had every symptom. Headaches, thirst, uncontrollable high blood pressure, low potassium, numbness, etc. It was textbook, and my previous endocrinologist and primary care doctor had missed it for all that time. I really could not believe how long I went undiagnosed.

Kitty's full story ...

Share Your Story

Do you have a diagnosis or do you suspect you have PA?
Are you experiencing difficulties finding adequate care?
Have your symptoms been resolved by adrenalectomy?

By sharing your story and signing the Foundation’s Open Letter, you will help us demonstrate that primary aldosteronism is not a rare disease, and that resources are urgently needed to advance research.