A man living with a rare and degenerative disorder is making a heartfelt plea to officials to get approved for a treatment that will help to prevent further damage to his lungs and liver.

Alpha-1 Antitrypsin Deficiency is a disorder caused by a missing blood enzyme that leads to liver and lung failure.

Forty-seven-year-old Chris Williams of Long Harbour was being treated for a variety of lung issues including asthma and COPD for years before finally being diagnosed with the disorder.

His lung capacity is at 23 per cent and he is living with Stage 4 cirrhosis of the liver.

While the damage can’t be reversed, replacement therapy involving injections of the missing enzyme can prevent further damage. Unfortunately, the family no longer has private insurance to cover the cost and the provincial government will not approve the therapy for him.

Williams, who has a young son, says he knows others with the disorder who have been approved. He says without the therapy he’s facing a double lung and liver transplant.

“Please help me live,” pleaded Williams as he choked back tears, “I want to see my family grow.”


The original article can be found here: https://vocm.com/2021/03/22/man-living-with-rare-disorder-making-plea-to-government-for-treatment-approval/