Heather Barrow and her daughter Claire were diagnosed in 2019 with Hypophosphatasia, a rare genetic metabolic bone disorder. The Barrow family felt isolated and helpless as they struggled to find information and resources on their rare disorder. They were forced to become the experts or gurus, of Hypophosphatasia. The Barrow family created RareGuru to connect and empower patients, caregivers, teens, and parents with rare diseases, disorders, and syndromes across the globe.
Hypophosphatasia (HPP) is a rare genetic disorder characterized by the abnormal development of bones and teeth. These abnormalities occur due to defective mineralization, the process by which bones and teeth take up minerals such as calcium and phosphorus. These minerals are required for proper hardness and strength. Defective mineralization results in bones that are soft and prone to fracture and deformity. Defective mineralization of teeth can lead to premature tooth loss. The specific symptoms can vary greatly from one person to another, sometimes even among members of the same family. There are six major clinical forms of HPP that range from an extremely severe form that can cause stillbirth to a form associated with only premature loss of baby teeth, but no bone abnormalities.
Resource: NORD (National Organization for Rare Disorders) rarediseases.org/rare-diseases/hypophosphatasia/
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Co-Founder of RareGuru
Hypophosphatasia Parent and Patient
“The journey for caregivers of those living with a rare disease is often a forgotten one. RareGuru will allow millions of fellow caregivers, like myself, to connect, share, and support one another. Together we will become even greater advocates for our loved ones affected by a rare disease while helping each other heal in the process.”
Co-Founder of RareGuru
Hypophosphatasia Parent and Caregiver