Pain Awareness Month and HypoPARA: The need for treatment options is clear

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(BPT) - Living with chronic pain makes day-to-day life incredibly challenging. It can interfere with everyday activities such as cooking, housework, and even just running simple errands. Dealing with pain can sometimes lead to depression and anxiety, creating a difficult cycle for people living with chronic pain to break free from.

Each September, the American Chronic Pain Association recognizes Pain Awareness Month, where pain professionals and activists work together to raise public awareness of issues in pain and pain management. According to the Centers for Disease Control and Prevention, chronic pain is a devastating burden that impacts over 50 million Americans, including patients with hypoparathyroidism (HypoPARA). However, there are currently no widely available FDA-approved treatment options to address the underlying disease that can help people living with HypoPARA improve their quality of life and alleviate their symptoms, which can include chronic pain.

What is HypoPARA?

Hypoparathyroidism is a rare endocrine disorder characterized by deficient or absent parathyroid hormone. It affects over 200,000 people worldwide, most of whom develop the condition following damage to or accidental removal of the parathyroid glands during thyroid surgery. The disorder causes lower than normal levels of calcium in the blood due to insufficient parathyroid hormone levels. Symptoms can be hard to identify, but tetany, back pain, tingling in fingers and toes, and muscle cramps are some of the most prevalent symptoms for patients with HypoPARA.

What treatments are available for people living with HypoPARA?

Only over-the-counter and prescription medications, which treat symptoms but do not address the underlying condition, are available. Some supplements, such as calcium, can even contribute to long-term side effects of the disorder. FDA officials are currently reviewing several medications that would comprehensively treat hypoparathyroidism’s underlying conditions and not just fix symptoms. FDA approval of these treatments is critical to provide a safety net of options so patients can better manage their HypoPARA and improve their quality of life.

What is being done to help develop treatment options?

Data collection is vital to advancing research and the development of new drugs, devices, and therapies for HypoPARA patients to live fulfilled, pain-free lives. The Hypoparathyroidism Association (HPA) has built a patient registry/patient-powered data platform for patients and caregivers of those living with HypoPARA. By participating in the data collection process, patients living with HypoPARA will inform researchers how their condition evolves, provide quality data for future clinical trials, advance research in new medicines, and accelerate the process for patients to receive therapeutics.

“There are days where I have no energy, my muscles ache, and my face and hands tingle,” said Patty Keating, a patient living with HypoPARA. “I have always enjoyed living an active lifestyle with my family and friends, but since I started experiencing pain due to my hypoparathyroidism, my days of prolonged physical activity have become much harder, and sometimes I am just not able to do so. Even when I use over-the-counter supplements, I still find myself in pain on a regular basis.”

Living with pain is a huge burden to bear, but strong data collection programs provide hope for patients living with HypoPARA that one day they will be able to live pain-free lives. Become a HypoPARA data sharer to help advance research and accelerate treatments.

To learn more, please visit hypoparathyroidism.rare-x.org.

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