Full Text of HR0614 98th General Assembly
HR0614 98TH GENERAL ASSEMBLY |
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| 1 | | HOUSE RESOLUTION
| 2 | | WHEREAS, In the United States, a disease is considered rare | 3 | | if it is believed to affect fewer than 200,000 Americans; | 4 | | according to the National Institutes of Health, there are | 5 | | approximately 6,800 diseases classified as rare; while each | 6 | | disease is rare, when considered together, they affect nearly | 7 | | 30 million Americans or almost 1 in 10 people; there are | 8 | | certain challenges that all patients and families affected by | 9 | | rare diseases share; and
| 10 | | WHEREAS, Hypophosphatasia, or HPP, is a rare, inherited | 11 | | disease known for its impact on bones and teeth; with almost | 12 | | all forms of hypophosphatasia, bones become soft because they | 13 | | cannot absorb important minerals like calcium and phosphorous; | 14 | | in some people, this can cause problems with bone growth and | 15 | | strength and lead to broken bones and bone pain; and
| 16 | | WHEREAS, An estimated 1 in 100,000 newborns have | 17 | | hypophosphatasia; milder cases may be more common in children | 18 | | and adults; it is currently unknown how many people have | 19 | | hypophosphatasia and have not been diagnosed with the disease; | 20 | | and
| 21 | | WHEREAS, The genes for hypophosphatasia are passed from | 22 | | parents to their children; one or both parents may pass along |
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| 1 | | the abnormal gene that causes hypophosphatasia; a person can | 2 | | inherit the disease by receiving 1 abnormal gene that causes | 3 | | hypophosphatasia from only one parent; when a person receives | 4 | | an abnormal gene from each parent, the disease may be more | 5 | | severe; hypophosphatasia rarely occurs in a person if neither | 6 | | parent has the abnormal gene that causes the disease; and | 7 | | WHEREAS, Research suggests that some people with | 8 | | hypophosphatasia may experience worse symptoms over time; | 9 | | these symptoms can affect parts of the body beyond the bones | 10 | | and teeth, including the brain, kidneys, and muscles; | 11 | | hypophosphatasia can appear anytime throughout a person's | 12 | | life; and
| 13 | | WHEREAS, Every person afflicted with hypophosphatasia | 14 | | experiences symptoms differently; the signs and symptoms of | 15 | | hypophosphatasia vary from one person to another, with bones | 16 | | and teeth most often affected; bones can be weakened, which may | 17 | | result in fractures; baby teeth can fall out earlier than | 18 | | normal and adult teeth can be affected as well; in a recent | 19 | | combined review of two studies of people who have | 20 | | hypophosphatasia, 1 in 8 people had severe bone pain, 1 in 8 | 21 | | had joint pain, and more than 1 in 5 people had muscle pain; | 22 | | and
| 23 | | WHEREAS, Hypophosphatasia is a rare disease that doctors |
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| 1 | | may not even know about; by raising awareness and educating the | 2 | | public on this rare disease, diagnosis and treatments may be | 3 | | prescribed earlier in the process; therefore, be it
| 4 | | RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE | 5 | | NINETY-EIGHTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that | 6 | | we designate October 30, 2013 as Illinois Hypophosphatasia | 7 | | Awareness Day in conjunction with HPP Awareness Week on October | 8 | | 20-26, 2013 to raise awareness, support, and recognition of | 9 | | people with hypophosphatasia across the State.
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