Did you know? HPP Awareness week runs every year in late October, and is intended to provide education and information regarding the rare disease of hypophosphatasia.
Hypophosphatasia is a rare and potentially fatal disease that interferes with mineralization, an essential process that promotes the development of bones and teeth. It is necessary to ensure that bones and teeth are strong and rigid. This disease is a result of mutations in the ALPL gene whose function is to create an enzyme called alkaline phosphatase.
The symptoms of hypophosphatasia can manifest at any point of someone’s life — as early as as pre-birth but as late as adulthood. This disease weakens and softens the bones, causing for abnormal skeletal growth that result in abnormally short limbs, soft skulls, or other unusual bone growths. Additionally, this might also result in hypercalcemia, kidney issues, and/or respiratory issues. Cases of hypophosphatasia that occur early in life are usually more severe than those that occur in adulthood. This is disease is often compared to rickets, a childhood bone disorder where bones are softened due to a significant deficiency of vitamin D.
The Uncommon Strength Campaign
The Uncommon Strength campaign was started to raise awareness and recognition of the extraordinary levels of strength and courage of those suffering from rare diseases, as well as those that support them. The battles for those suffering from rare diseases are long and hard-fought, evidenced by Uncommon Strength’s statistic that the “average time from a person’s first symptom to an accurate diagnosis is approximately five years.” Uncommon Strength seeks for those with these life experiences to share their journeys as sources of strength for others with similar life circumstances.
PANTHERx® Specialty Pharmacy contributed to raising awareness during HPP Awareness week by participating in the Uncommon Strength website’s Build Your Hero feature. Pictured below is a number of our staff showing off their hero creations!