Support Groups for People Affected by Hypoparathyroidism

Most people may not understand the challenges of living with hypoparathyroidism, and constantly trying to explain them can be tiring.

Support groups that bring you into contact with other patients and families may help.

What is hypoparathyroidism?

Most of us have four parathyroid glands, located just behind the thyroid gland at the front of the neck. These glands release parathyroid hormone (PTH), which controls the levels of calcium and vitamin D in the blood.

Hypoparathyroidism occurs when the parathyroid glands cannot produce enough PTH. This can affect your bones, intestines, and kidneys. Symptoms may include weakness, muscle cramps, abnormal sensations in the hands, excessive nervousness, and uncontrollable spasms.

Patients require lifelong monitoring by a healthcare provider. Treatment is centered around oral supplements, which patients must take regularly to avoid an onset of symptoms. This can interfere with daily life.

What are support groups?

While they do not take the place of counseling, support groups can be beneficial in that they are made up of people facing similar challenges as you. Groups meet, in person or virtually, to give support, share practical advice, and offer each other encouragement. They are usually run by members, and may be attended by both the patient and their family.

Most support groups meet regularly — online is most common nowadays, and necessary for periods that restrict contact like the COVID-19 pandemic — while others may meet only as needed.

Will a support group be suitable for me?

Support groups may not be for everyone. Some people may feel uncomfortable talking in a group. Even if you are unsure or feel uneasy, consider attending a few times before making a decision.

Look for a support group that works for you. Ask yourself whether you prefer structure and would enjoy having a group leader, or whether you’d like a less formal setting.

How to find a support group?

Ask your physician, counselor, or other healthcare professional for suggestions. You also can ask friends who might know, or go directly to other individuals who have hypoparathyroidism. Your local library or community center may be able to help.

Support groups and related resources

Here are links to some hypoparathyroidism support groups or resources that may connect you with other families affected by the disease:

• Hypoparathyroidism Association
• Light of Life Foundation 
• Hypopara Lodge
• Aepios
• Hormone Health Network
• American Thyroid Association
• Natpara Patient Ambassadors (offered by Shire)
• Parathyroid UK
• Hypoparathyroidism France

Last updated: May 29, 2020

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Hypoparathyroidism News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.