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 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 ...

Meet Joann

Diagnosis:
Unilateral disease
Years to diagnosis: > 15

I experienced a traumatic event in 2000 and was diagnosed with PTSD. Shortly after, I started experiencing hypertension crises that took me to the ER often. Each time I was there, they would notice that my potassium was very low. They would replenish my levels and send me home saying it was stress/anxiety/menopause. I asked continuously that they consider other causes, but they never did.

Joann's full story ...

Meet Rene

Diagnosis:
Bilateral disease
Years to diagnosis: > 10

In my early 40s I began having intermittent high blood pressure, anxiety, insomnia, trouble concentrating and muscle cramps. My doctor asked me to make lifestyle modifications, but the truth is I was already leading a healthy lifestyle. I routinely exercised and ate a balanced diet. However, I did have a stressful job which I thought was the cause of my issue. Medications could not bring my blood pressure at goal.

Rene's full story ...

Meet Natanja

Diagnosis:
Bilateral disease
Years to diagnosis: > 20

The impact of having lived 23 years without proper diagnosis and with huge resistance when seeking help is enormous. Physically, but mentally and emotionally just as much. I was a professional dancer. I taught in higher education around the world. I knew and trusted my body. I lost not only my job but the thing I loved doing most, my language in the world. Psychologists implied I was responsible for the pain.

Natanja'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 Debbie

Diagnosis:
Unilateral disease
Years to diagnosis: > 10

The first symptom I noticed was a rapid heartbeat, particularly when attending large meetings at work. It was the start of a stressful period in my life in my 40’s. My blood pressure was high (maybe 140/80-90) at the doctor’s office, but home readings were fine so I didn’t think too much about it. I underwent a treadmill test, and the doctor who ran it asked me why I was there, as I passed with flying colors.

Debbie'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.