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| THE GENERAL ASSEMBLY OF PENNSYLVANIA |
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| HOUSE RESOLUTION |
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| INTRODUCED BY SHAPIRO, MARCH 14, 2011 |
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| INTRODUCED AS NONCONTROVERSIAL RESOLUTION UNDER RULE 35, MARCH 14, 2011 |
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| A RESOLUTION |
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1 | Designating April 10, 2011, as "Familial Dysautonomia Awareness |
2 | Day" in Pennsylvania. |
3 | WHEREAS, Familial dysautonomia, also known as FD and Riley- |
4 | Day syndrome, is a rare genetic disease that affects the |
5 | autonomic and sensory nervous systems of children from birth; |
6 | and |
7 | WHEREAS, It is estimated that one in 27 individuals of |
8 | Eastern European and Jewish ancestry is a carrier of the gene |
9 | for familial dysautonomia; and |
10 | WHEREAS, The most striking symptoms of familial dysautonomia |
11 | are reduced sensitivity to pain and temperature and the |
12 | inability to produce tears; and |
13 | WHEREAS, It affects every major system of the body, causing |
14 | severe respiratory, cardiac, orthopedic, digestive, renal and |
15 | vision problems; and |
16 | WHEREAS, Children with familial dysautonomia lack the most |
17 | basic reflexes and instincts, resulting in an inability for |
18 | their bodies to function normally; and |
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1 | WHEREAS, Children affected by familial dysautonomia cannot |
2 | control their blood pressure or heart rate, they lack the |
3 | ability to suck at birth and the ability to swallow properly and |
4 | are at a greater risk of developing pneumonia; and |
5 | WHEREAS, Familial dysautonomia was once thought to be a fatal |
6 | childhood disease with most patients expected to live to only |
7 | five years of age; and |
8 | WHEREAS, Advances in treatment have dramatically extended |
9 | life expectancy, but children with familial dysautonomia still |
10 | suffer from chronic and often debilitating symptoms that prevent |
11 | them from leading normal lives; and |
12 | WHEREAS, The average lifespan of the familial dysautonomia |
13 | population is approximately 15 years of age; and |
14 | WHEREAS, The major causes of death are the result of |
15 | pulmonary complications or sudden death due to autonomic |
16 | instability; and |
17 | WHEREAS, Due to medical advances, it is projected that babies |
18 | born with familial dysautonomia within the last five years will |
19 | have a 50% chance of surviving to 40 years of age; and |
20 | WHEREAS, There is no cure for familial dysautonomia, but |
21 | treatments are supportive and preventative; and |
22 | WHEREAS, Supportive therapies for familial dysautonomia |
23 | include medications to maintain and regulate cardiovascular, |
24 | respiratory and gastrointestinal function, and surgical |
25 | interventions that include fundoplication, gastrostomy, spinal |
26 | fusion and tear duct cautery; and |
27 | WHEREAS, General population genetic screening is now |
28 | available, and such screening can significantly reduce the |
29 | frequency of new cases of familial dysautonomia; and |
30 | WHEREAS, It is imperative that there be greater public |
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1 | awareness of this serious health issue, and more must be done to |
2 | increase activity at the national, state and local levels to |
3 | promote screening and to support the patients as well as their |
4 | families; therefore be it |
5 | RESOLVED, That the House of Representatives designate April |
6 | 10, 2011, as "Familial Dysautonomia Awareness Day" in |
7 | Pennsylvania. |
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