HR0614 98TH GENERAL ASSEMBLY

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HOUSE RESOLUTION

WHEREAS, In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans; according to the National Institutes of Health, there are approximately 6,800 diseases classified as rare; while each disease is rare, when considered together, they affect nearly 30 million Americans or almost 1 in 10 people; there are certain challenges that all patients and families affected by rare diseases share; and

WHEREAS, Hypophosphatasia, or HPP, is a rare, inherited disease known for its impact on bones and teeth; with almost all forms of hypophosphatasia, bones become soft because they cannot absorb important minerals like calcium and phosphorous; in some people, this can cause problems with bone growth and strength and lead to broken bones and bone pain; and

WHEREAS, An estimated 1 in 100,000 newborns have hypophosphatasia; milder cases may be more common in children and adults; it is currently unknown how many people have hypophosphatasia and have not been diagnosed with the disease; and

WHEREAS, The genes for hypophosphatasia are passed from parents to their children; one or both parents may pass along the abnormal gene that causes hypophosphatasia; a person can inherit the disease by receiving 1 abnormal gene that causes hypophosphatasia from only one parent; when a person receives an abnormal gene from each parent, the disease may be more severe; hypophosphatasia rarely occurs in a person if neither parent has the abnormal gene that causes the disease; and

WHEREAS, Research suggests that some people with hypophosphatasia may experience worse symptoms over time; these symptoms can affect parts of the body beyond the bones and teeth, including the brain, kidneys, and muscles; hypophosphatasia can appear anytime throughout a person's life; and

WHEREAS, Every person afflicted with hypophosphatasia experiences symptoms differently; the signs and symptoms of hypophosphatasia vary from one person to another, with bones and teeth most often affected; bones can be weakened, which may result in fractures; baby teeth can fall out earlier than normal and adult teeth can be affected as well; in a recent combined review of two studies of people who have hypophosphatasia, 1 in 8 people had severe bone pain, 1 in 8 had joint pain, and more than 1 in 5 people had muscle pain; and

WHEREAS, Hypophosphatasia is a rare disease that doctors may not even know about; by raising awareness and educating the public on this rare disease, diagnosis and treatments may be prescribed earlier in the process; therefore, be it

RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE NINETY-EIGHTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we designate October 30, 2013 as Illinois Hypophosphatasia Awareness Day in conjunction with HPP Awareness Week on October 20-26, 2013 to raise awareness, support, and recognition of people with hypophosphatasia across the State.