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 Varun

Varun, a patient with primary aldosteronism

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.

Meet William

William, a patient with primary aldosteronism

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.

Meet Kitty

Kitty, a patient with primary aldosteronism

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.

Meet Joann

Meet Jo Ann

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.

Meet Rene

Rene, a patient with primary aldosteronism

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.

Meet Natanja

Patient portrait by the beach

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.

3533 E Ahwatukee CT
Phoenix, AZ 85044
+1 (602) 726-0665
United States
EIN: 84-3216292
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Public Charity

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