Living with a rare disease: chronic hypoparathyroidism

Imagine living with a condition that your friends and family have never heard of, and can make you experience multiple symptoms such as muscle cramps, tingling and twitching of muscles, “brain fog”, anxiety and fatigue. Meet some patients living with chronic hypoparathyroidism. (1)

“There would be times I felt like I was being electrocuted from head to toe. My fingers and toes locked up; I had severe brain fog. At work, I was so antsy from the burning and tingling in my legs I could hardly stand it. My mind was so hazy that as hard as I tried, I couldn’t remember how my husband proposed to me. I thought I was going crazy, and doctors did too.”

“I finally decided something was seriously wrong when I found
myself crying at the grocery store, too weak to lift a carton of milk into my shopping trolley. I cried every time I needed to go to a new doctor or specialist. I was made to feel like my symptoms were something I was making up,and that embarrassed me.”

What exactly is chronic hypoparathyroidism?

Hypoparathyroidism is a rare disease that occurs when the parathyroid glands in the neck do not produce enough parathyroid hormone (PTH), which impairs the body’s ability to regulate minerals, in particular calcium and phosphate. (2)

Chronic hypoparathyroidism is diagnosed in patients with a low concentration of calcium in the blood and inappropriately low PTH levels; for post surgical chronic hypoparathyroidism, the features of hypoparathyroidism must persist for at least 6 months after surgery. (3,4)

The most common cause of hypoparathyroidism is after surgery to the neck which can result in damage to, or loss of the parathyroid glands. Additional causes include hereditary factors and autoimmune disease. (3,4)

For more information on the rare condition hypoparathyroidism, please click here for an animated video
“By the time I was 12, I was taking 64 pills a day. At sleepovers, I was the girl with a sleeping bag, a change of clothes, and a suitcase for my medicine. Some days I would feel decent, but other days I’d be in a sheer panic. My body would be in full, painful tetany spasms, head to toe, with the uncomfortable numbness and tingling in my hands, feet, and face.”
Chari (diagnosed as a child)
“One morning I woke with pain so bad in my lower back, my son found me crawling to the car. I didn’t have the time or the money to be sick. I was an absolute mess both emotionally and physically, and this time the pain wasn’t going away. I started crying as I thought, why now, why me and how in the world will we make it?”

Treatment of hypoparathyroidism to date has focused on maintaining serum calcium with daily oral calcium and active vitamin D.

Some patients with chronic hypoparathyroidism can have difficulty maintaining calcium levels within the normal range and may require high doses of calcium and vitamin D supplementation. (5)

In those patients where there is not sufficient control of serum and urine calcium levels, additional treatments may be required to address the underlying condition. (3)
Not many people know about chronic hypoparathyroidism,
which can make those living with the condition and trying to control their symptoms, feel even more isolated and alone. (1)

Visit to find out more about this rare disease.