I am new to Alpha 1 MZ
Hi, when you start reading here, you are most likely diagnosed with an Alpha 1 Antitrypsin Deficiency, and you may not even know at this time that there are different types. Well... don't worry we got you covered and we welcome you to this group. Be assured, you are not alone! There are approximately 35Million persons world wide which have this inherited disease. The reason that Alpha 1 Antitrypsin deficiency is not well known (yet) is that it is very hard to diagnose based on symptoms, this is why most of us have seen many many doctors before we finally found out the root cause of our problems.
Let me first explain that there are a lot of different types of Alpha 1 Antitrypsin Deficiencies, but that this website / group has a focus on Alpha 1 MZ, which is the most common deficiency
The most common / known types are:
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MM – This is the normal healthy
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ZZ – The variant where you only have ~15%
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MS – The variant where you have ~ 80%
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MZ – The variant where you have ~ 50%
The way to find out about your type, is a genetic test, which you can ask your doctor, but some persons also use a commercial test kit to find out. The probability that you are an MZ is quite high, because about 4% of the population with an European heritage has the MZ type, which means that 35Million persons world wide are affected.
When you have found out that you are an Alpha 1 MZ, it means that you have about 50% Alpha 1 Antitrypsin in your body compared to a healthy person. This ~50% is typically enough to have a good life in case you are living a healthy life style. (No alcohol, clean air /no smoking and a good healthy diet)
Having said this, we all know that we don't live in utopia. So you may work in a very dusty environment, or you live in an area with a lot of air pollution, you may drink some alcohol and you may like some of the unhealthy fatty food with a lot of sugar....
Before we go into the Alpha 1 Antitrypsin detailed stuff, let me first tell you that a healthy life style is your key !!
So the first thing to do, is stop smoking (Lungs), stop using alcohol (Liver)
Now let me tell you a bit more about Alpha 1 Antitrypsin or AAT;
Alpha 1 Antitrypsin is made by your liver, and the most simple explanation is, that it takes care that "inflammations" are stopped when they are no longer required. As an example, when you get some dust or other stuff in your lungs, your body reacts on that, and when that problem is resolved, the reaction needs to be stopped. This is in simple terms what AAT does. Now you can understand that when you have less AAT, that reactions in your body keep on going longer which can do harm, especially in your lungs.
There are more and more scientific reports, which indicate that a lower AAT may also impact your immune system. You may have noticed that you had more issues as a child compared to other children, and or indications of an autoimmune issue ?
Now a bit about the liver, as mentioned, AAT is made by your liver, the problem is that when you are an Alpha 1 MZ, is that the "M" type Alpha 1 Antitrypsin nicely comes out of the liver and in your bloodstream, but that the "Z" part gets stuck in your liver cells. A part of the "Z" AAT forms polymers in the liver cell and as such causes a "stress" for the liver. This means that your liver has problems doing all its other tasks for your body. This gets worse when you are getting older, because a liver has lost about 35% of its capacity when you are 65. This is also the reason that most of the Alpha1 MZ problems are starting during your more mature adult life.
Now you understand why an Alpha 1 MZ should not smoke, live in clean air and eat food which is easy for the liver to deal with. Before I forget, NSAID like ibuprofen, is also known to be very bad for Alpha 1 MZ livers, and don't take unnecessary high doses of supplements!!
So now you roughly understand what it all means and what you can do, I will tell you a bit about the issues we see in real life within our Alpha 1 MZ group;
The lung issues we see are typically lung emphysema, because you may work in an environment with dirty air, so some of us are on Alpha 1 Antitrypsin infusions and some even had lung transplants.
Other issues we see are immune issues like autoimmune, because of the immune regulating properties of Alpha 1 Antitrypsin.
We also see issues with the tendons tendon sheath and ligaments, because Alpha 1 Antitrypsin has an effect on the connective tissue in your body.
The liver issues we see are typically, fatty liver, fibrosis and cirrhosis and sometimes a liver transplant is required
Because of the liver issues, and especially at a more mature age, we also see very often a digestion issue which may result in a shortage of minerals and vitamins. This shortage may in turn result in serious issues, like neurological issues, difficulties walking, extremely tired, not able to work anymore etc. etc.
You may want to look into these vitamin and mineral deficiencies because the liver plays an important role here, and because the liver enzymes are typically within the limits, (its a slow process) these things are often overlooked.
It may also be a good idea to discuss your issues and concerns with other Alpha 1 MZ's and hear how they deal with it on a daily basis, so you don't feel completely alone....
There are a number of Facebook pages specifically for Alpha 1 Antitrypsin deficiency.