November is Alpha-1 Awareness Month
by Rebecka & Julie Hoyt, Editor & Photographer
It was 12 years ago during the fall time that our daughter, Julie was diagnosed at 3 weeks of age with Alpha-1 Anti Trypsin Deficiency. You might say, “Say what is that again?” Well, Alpha-1 Anti Trypsin (A1AT), is a protein that’s produced in the liver to be transported out of the liver to protect the lungs from illness/disease. However, this protein is the wrong shape to be let out of the liver. There are consequences due to an over-abundance of this protein in the liver that can possibly lead to liver disease/Cirrhosis and/or lung diseases. It has required some people (Alpha’s) to have liver and/or lung transplants.
So, how did we find out about this disease? We knew before Julie was born that my husband, Tom’s uncle, had Cirrhosis and needed a liver transplant. During her stay in a couple of hospitals after she was born, she had elevated liver enzymes and with tons of questions about our family history and Tom’s uncle, we then learned that he had A1AT as well. To be told that your first-born baby has this disease and that there is no cure for it, well, it’s very hard to take in.
Julie was referred to a pediatric gastroenterologist in Kalamazoo, MI. This doctor was a very well-educated physician in this field, and he set the bar high. However, after the first couple of years of Julie’s life, he moved away. After going through with a couple of other doctors, Julie is now with a third gastroenterologist group at Helen DeVos Children’s Hospital in Grand Rapids, MI. The doctors here have been great and very knowledgeable.
In order for Julie to stay healthy with A1AT, she has to avoid smoking/second-hand smoke and alcohol for the rest of her life. Her first doctor said it this way, “It’s like people who are allergic to the sun, she has to act like she’s allergic to smoke and alcohol. A person who has A1AT is more likely to have more health issues if she takes in these substances.” We realize how lucky and grateful we are to know about this now until later in her life and starts having liver/lung issues. To keep track of the A1AT, she gets blood work done every 6 months and a liver ultrasound once a year. Her liver enzymes have stayed consistent the past couple of years, except that her liver is little enlarged for her age, but isn’t a huge worry. When she turns 13 she’ll have to start seeing a pulmonologist to measure her lung function. Being that she has known about this her whole life, it is easy for her to accept these certain things to avoid in life.
Julie carries on in her life enjoying 7th grade band, kids choir at church, youth group, AHG, Girl’s Golf, Floor Hockey, Buchanan Jr. Equestrian Team, BMS Student Council, is a part of the BMS Jr. Herd Student Credit Union, playing with her cat and dog at home, and can read a 200-ish page book in an hour or so. November is Alpha-1 Awareness Month with the purple awareness ribbon, so that is the reason for this article, to make others aware of this rare disease. Please be good to your body!
You may find more information on Alpha-1 Anti Trypsin Deficiency at: www.alpha1.org. #Alpha1Awareness
For more information, contact: Rebecka & Tom Hoytemail@example.com/269-697-9874