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1
HOUSE RESOLUTION

 
2    WHEREAS, In the United States, a disease is considered rare
3if it is believed to affect fewer than 200,000 Americans;
4according to the National Institutes of Health, there are
5approximately 6,800 diseases classified as rare; while each
6disease is rare, when considered together, they affect nearly
730 million Americans or almost 1 in 10 people; there are
8certain challenges that all patients and families affected by
9rare diseases share; and
 
10    WHEREAS, Hypophosphatasia, or HPP, is a rare, inherited
11disease known for its impact on bones and teeth; with almost
12all forms of hypophosphatasia, bones become soft because they
13cannot absorb important minerals like calcium and phosphorous;
14in some people, this can cause problems with bone growth and
15strength and lead to broken bones and bone pain; and
 
16    WHEREAS, An estimated 1 in 100,000 newborns have
17hypophosphatasia; milder cases may be more common in children
18and adults; it is currently unknown how many people have
19hypophosphatasia and have not been diagnosed with the disease;
20and
 
21    WHEREAS, The genes for hypophosphatasia are passed from
22parents to their children; one or both parents may pass along

 

 

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1the abnormal gene that causes hypophosphatasia; a person can
2inherit the disease by receiving 1 abnormal gene that causes
3hypophosphatasia from only one parent; when a person receives
4an abnormal gene from each parent, the disease may be more
5severe; hypophosphatasia rarely occurs in a person if neither
6parent has the abnormal gene that causes the disease; and
 
7    WHEREAS, Research suggests that some people with
8hypophosphatasia may experience worse symptoms over time;
9these symptoms can affect parts of the body beyond the bones
10and teeth, including the brain, kidneys, and muscles;
11hypophosphatasia can appear anytime throughout a person's
12life; and
 
13    WHEREAS, Every person afflicted with hypophosphatasia
14experiences symptoms differently; the signs and symptoms of
15hypophosphatasia vary from one person to another, with bones
16and teeth most often affected; bones can be weakened, which may
17result in fractures; baby teeth can fall out earlier than
18normal and adult teeth can be affected as well; in a recent
19combined review of two studies of people who have
20hypophosphatasia, 1 in 8 people had severe bone pain, 1 in 8
21had joint pain, and more than 1 in 5 people had muscle pain;
22and
 
23    WHEREAS, Hypophosphatasia is a rare disease that doctors

 

 

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1may not even know about; by raising awareness and educating the
2public on this rare disease, diagnosis and treatments may be
3prescribed earlier in the process; therefore, be it
 
4    RESOLVED, BY THE HOUSE OF REPRESENTATIVES OF THE
5NINETY-EIGHTH GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that
6we designate October 30, 2013 as Illinois Hypophosphatasia
7Awareness Day in conjunction with HPP Awareness Week on October
820-26, 2013 to raise awareness, support, and recognition of
9people with hypophosphatasia across the State.