We use the word “community” in lots of contexts when it comes to health. We might mean the people who live in the same area, we might mean the scientific or medical communities and whether they generally agree about a certain health topic, or we might mean all of the people who suffer from a certain condition.
Finding out you have something wrong with you is always a stressful time, but it’s worse if it’s a condition you’ve never heard of before. You have no idea how to react or what to expect in future. That’s why it’s so powerful to be able to connect with people with the same diagnosis.
It’s a lot easier with the internet. You go online, you type in the condition in question and you’re almost guaranteed to find a forum or society for others with the same experiences. They can offer encouragement and advice and let you know that you’re not going through this by yourself.
Take primary aldosteronism. You might not have heard of it. When we talk about hormone imbalances, we often mention the sex hormones like testosterone, or insulin in the context of diabetes. When we talk about high blood pressure, we mention lifestyle like diet and amount of exercise. Aldosteronism, however, is a hormone imbalance that can cause high blood pressure.
Aldosterone is a hormone produced by the adrenal glands that helps regulate your sodium and potassium levels. It’s probably not as famous as adrenaline, which comes from the same place. Too much aldosterone (primary aldosteronism or Conn’s Syndrome) can lead to too much sodium in your blood and not enough potassium. This is what leads to high blood pressure, as well as symptoms including muscle aches, spasms, fatigue and increased urination.
Causes of aldosterone often include tumors on the adrenal glands or adrenal glands that are enlarged and overactive. Treatment may involve medications to lower aldosterone or surgery to remove the tumour. Lifestyle changes to diet, exercise and smoking habits can still help. The difficulty is that it’s not always obvious that any symptoms are from aldosteronism, so it can take a while to identify and diagnose.
Estimates suggest that around 1 in 10 people with high blood pressure may have primary aldosteronism. When patients band together into a community, it can help raise awareness of the condition and improve research and treatment.