Chronic illnesses like alpha-1 antitrypsin deficiency can take a lot of energy out of those who are suffering and it can be tough to find a balance and not overdo it. Alpha-1 antitrypsin deficiency occurs when the liver doesn't release enough alpha-1 antitrypsin into the blood, which is a protein that helps with lung function and can also impact the liver. It is a genetic condition meaning those who have alpha-1 antitrypsin deficiency and are carriers are born with these genes. There is no cure or anything that can be done to change these genes. If you have this illness, it's not your fault.
Patients who have alpha-1 antitrypsin deficiency may experience lower oxygen saturation levels and require supplemental oxygen along with augmentation therapy as well as inhalers for shortness of breath and other symptoms. This can interfere with all aspects of life from working, daily life, finances, mental health, and so much more. However, there are some lifestyle changes that those suffering with alpha-1 antitrypsin deficiency can make to try to help combat some of their symptoms.
These lifestyle changes include:
If you think you may have alpha-1, ask your doctor today how you can be tested. It's a simple blood test that is free and will allow you to know your alpha-1 antitrypsin protein level and your phenotype (ZZ, MZ, MM, etc.).
I hope you find this information helpful.
To learn more about alpha-1 antitrypsin deficiency, check out Samantha's book Living with Alpha-1 Antitrypsin Deficiency, which is published by Hatherleigh Press and distributed by Penguin Random House.
Picture from rheumatoidarthritis.net
Working with a chronic illness is difficult to say the least. Even though we are in pain, feel fatigued, juggling doctor appointments, etc. we still may have to work. We still have bills to pay and most likely have a pile of medical bills we have to pay. We want to work. We don't want handouts. Life doesn't stop when someone has a chronic illness. We may have to put our dreams and careers on hold because of our chronic illness. If this is you, know that you are more than your illness. You are more than your job. You are more than what you are physically able to do.
It's important that we find a job we can do physically so that we don't further exacerbate the symptoms we are experiencing. With endometriosis, if I worked for eight hours a day standing on my feet, my pelvic pain intensified and worsened. I was exhausted, fatigued, had nausea and headaches. This is why I haven't been able to work full time in the last five or more years as a pharmacist or pharmacy technician. I haven't had a job more than a couple of months since 2013 because of my health.
I am now working in a local restaurant office for about five hours a day Monday through Friday. I'm able to sit most of the day verses standing on my feet. I haven't been experiencing pelvic pain and I attribute that to not standing while I work. I thought after withdrawing from pharmacy school that I would never find something else that I would like, but I have. I'm a nerd and enjoy numbers, spreadsheets, and working on computers. I took Accounting classes in high school and college, but never really considered doing anything with it until this opportunity came up, which I'm thankful for.
It's important that we put our health first even while working. It should be okay to ask for accommodations. If you feel like you're having to jeopardize your health for you job, it's okay to speak up for yourself and even quit if that's what you need to do. It has been hard to recognize where my health is and to quit school and work when I needed to. It's hard speaking up for myself, but if I don't, people won't know what I'm going through or help if they can or are willing to.
If you're not able to work, that's okay, too. You are more important than a paycheck. It's okay to apply for disability and ask for help. Know that you are not alone.
Here are five tips that I think are important:
I hope you find this helpful.
Picture from: urgentcarefl.com
November is Alpha-1 Antitrypsin Deficiency Awareness Month and is being recognized by the Alpha-1 Foundation, in the state of South Carolina, as well as other states by their governors.
Why is Alpha-1 Antitrypsin Deficiency Awareness Month so Important?
Alpha-1 antitrypsin deficiency is an illness that at least 100,000 Americans have been diagnosed with it. There could be more people suffering with it that aren’t aware they are or what it is. It occurs when the liver doesn’t release enough alpha-1 antitrypsin protein, which helps the lungs function properly. With low levels of the protein, lung illnesses and liver disease are more likely to occur. Alpha-1 antitrypsin deficiency is a disability as it can affect oxygen saturation levels and the respiratory system.
Symptoms that can be present with alpha-1 antitrypsin include shortness of breath, chronic respiratory infections with or without mucous, low oxygen saturation levels, a large decrease in lung function in a small amount of time, as well as others.
Illnesses that can accompany alpha-1 or be diagnosed instead of alpha-1 include: chronic obstructive pulmonary disease, emphysema, asthma, as well as others. Those who smoke are more likely to show signs of alpha-1 than those who don’t smoke with the illness.
It is a genetic disease meaning that it runs in families. However, just because one sibling has it, doesn’t mean all siblings will have alpha-1.
Augmentation therapy given by infusion is the treatment for alpha-1; there is no cure. Inhalers, nebulizers, and supplemental oxygen can be prescribed to help combat symptoms like shortness of breath.
Here are five reasons Alpha-1 Antitrypsin Deficiency Month is so important:
1. Alpha-1 Antitrypsin Deficiency Awareness Month (November) can bring all of us together who suffer with alpha-1, which oftentimes leaves us isolated because it’s so rarely diagnosed and we don’t know anyone else with it.
2. We are louder in numbers. The more people we have talking about alpha-1, the better.
3. We can reach people who don’t know what alpha-1 antitrypsin deficiency is and make sure they receive the correct information, especially if they think they may have it.
4. We want the medical community to know we aren’t backing down!
5. We can let people know they aren’t alone in their symptoms.
Alpha-1 antitrypsin deficiency awareness is extremely important no matter what day or month of the year it is. When we ban together, we are more likely to be heard. I encourage you to talk to others and tell your story. Maybe it will lead to someone being diagnosed who otherwise wouldn’t have been and would have been suffering and not known why.
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.