November is Alpha-1 Awareness Month, a 30-day initiative that encourages the Alpha-1 community to share stories and resources and raise funds to support the search for a cure.
In Australia, it’s estimated that around 4,000 people have the ZZ genotype for Alpha-1 Antitrypsin Deficiency (AATD)
This year’s theme is “The Power to Connect,” highlighting the importance of connecting with your fellow Alphas through Alpha-1 Support Groups, Alpha-1 specialists and your local community to raise #Alpha1Awareness.
As many of you know, this is the cause of my current health issues, and I would like to share with you some information about how the Alpha 1 condition can affect the liver, as it is more commonly seen as a lung issue.
Normally, the liver makes a protein called alpha-1 antitrypsin (AAT), which then travels through the bloodstream to help protect the lungs and other parts of the body.
In people with Alpha-1, larger than usual amounts of AAT are made in the liver, and this protein is made in a different shape than usual. In people with Alpha-1, almost 85 percent of this protein builds up in the liver and is unable to get to the lungs and other organs.
If the liver cannot break down the abnormal protein, the liver gradually gets damaged and scarred, resulting in a condition called cirrhosis. Cirrhosis can result in intestinal bleeding, fluid in the belly (ascites), and other health problems.
Not everyone with Alpha-1 develops liver disease. Researchers are working on discovering other factors that may contribute to the development of liver disease in some Alphas.
Although Alpha-1 cannot be cured, there are ways to prevent or reduce health problems related to Alpha-1, including liver disease.
The best ways to prevent liver problems in someone with Alpha-1 include:
- •Avoid drinking alcohol and using tobacco (including smoking and vaping)
- Eat a healthy diet and maintain a healthy weight
- Get vaccinated against Hepatitis A (hep A) and Hepatitis B (hep B), which can lead to liver damage
- See a doctor for regular checkups and recommended screenings, which may include blood tests, ultrasounds, X-rays, or CT scans
- Talk to a doctor before using any herb, vitamin, or other therapy; some of these items may cause liver damage
As per my condition though, it is very hard to outrun, I have not had a drink for 24 years, and ate a plant based diet for the last 8 years, and am now on the list for a liver transplant.
Some symptoms of liver disease caused by Alpha-1 can be treated with medications. These include jaundice, internal bleeding, itchiness, and a buildup of fluid in the abdomen.
In people with severe scarring of the liver (cirrhosis) caused by Alpha-1, a liver transplant may be necessary. A liver transplant involves surgery to remove the diseased liver and replace it with a healthy one that has been donated by another person. A healthy liver should make normal AAT.
It’s easy to do a test for Alpha 1 in a blood test, the more people that are aware of this condition the more chance we have of finding medical treatment and potentially cures.
For more information about A1AD or to donate to our local Australian Charity visit https://www.a1oa.org.au/
