Alpha-1 Antitrypsin Deficiency added to SSD Compassionate Allowance Rare Disease List
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I am putting forth this petition on behalf of all who suffer from Alpha-1 Antitrypsin Deficiency. This Petition is to be submitted to the Social Security Administration’s Compassionate Allowance Team.
Diagnosed with Alpha -1 Antitrypsin Deficiency in Feb 2016 I have been learning all I can about this Rare Disease. During my research I came across The Social Security Administrations Compassionate Allowance List of Rare Diseases that was put into place in 2007. Since then, only a handful of rare Diseases have been added to the original List. This Petition will help those who suffer severely with Alpha-1 Antitrypsin Deficiency to be able to get through the Social Security Disabilty Claims Process faster. Alpha-1 Antitrypsin Deficiency is not on this list. My Goal is to get enough people to sign The Petition so their Voice will be Heard. We need to make this happen so that precious time is not wasted when an Alpha needs assistance. Here is a link to the list that I am trying to get Alpha-1 Antitrypsin Deficiency on.https://www.ssa.gov/compassionateallowances/conditions.htm
Alpha-1 antitrypsin deficiency is an inherited disorder that may cause lung disease and liver disease. The signs and symptoms of the condition and the age at which they appear vary among individuals.
People with alpha-1 antitrypsin deficiency usually develop the first signs and symptoms of lung disease between ages 20 and 50. The earliest symptoms are shortness of breath following mild activity, reduced ability to exercise, and wheezing. Other signs and symptoms can include unintentional weight loss, recurring respiratory infections, fatigue, and rapid heartbeat upon standing. Affected individuals often develop emphysema, which is a lung disease caused by damage to the small air sacs in the lungs (alveoli). Characteristic features of emphysema include difficulty breathing, a hacking cough, and a barrel-shaped chest. Smoking or exposure to tobacco smoke accelerates the appearance of emphysema symptoms and damage to the lungs.
About 10 percent of infants with alpha-1 antitrypsin deficiency develop liver disease, which often causes yellowing of the skin and whites of the eyes (jaundice). Approximately 15 percent of adults with alpha-1 antitrypsin deficiency develop liver damage (cirrhosis) due to the formation of scar tissue in the liver. Signs of cirrhosis include a swollen abdomen, swollen feet or legs, and jaundice. Individuals with alpha-1 antitrypsin deficiency are also at risk of developing a type of liver cancer called hepatocellular carcinoma.
In rare cases, people with alpha-1 antitrypsin deficiency develop a skin condition called panniculitis, which is characterized by hardened skin with painful lumps or patches. Panniculitis varies in severity and can occur at any age.
In the United States, Canada, and several European countries, lung-affected A1AD patients may receive intravenous infusions of alpha-1 antitrypsin, derived from donated human plasma. This augmentation therapy is thought to arrest the course of the disease and halt any further damage to the lungs. Long-term studies of the effectiveness of A1AT replacement therapy are not available. It is currently recommended that patients begin augmentation therapy only after the onset of emphysema symptom
There is no Cure for Alpha-1 Antitrypsin Deficiency. Those who are suffering from Alpha-1 would like Alpha-1 Antitrypsin Deficiency to be added to the Social Security Compassionate Allowance Rare Disease List for Disability Benefits. This would expedite the process for Alpha-1 Patients that are applying for Social Security Disability Benefits.
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