A Chronic Illness Survival Guide
More than 100,000 individuals in the U.S. live with alpha-1 antitrypsin deficiency (A1AD), a rare genetic, incurable disease which causes the liver to not release a certain protein which protects and keeps the lungs functional. What do you do if you’re diagnosed? How about long-term?
Understand Your Diagnosis.
Take a step back and evaluate where your body is. It is important to understand your body, A1AD, augmentation therapy and lifestyle changes. Research all of your options. Do not let your doctor pressure you into any treatments you are not 100 percent on board with.
Form a Team.
You cannot do it alone. From physicians to family, it takes teamwork and specialists to put A1AD on the defense. Having support is crucial in fighting this illness. On days when we don’t feel like pushing to find answers anymore, those supportive people in our lives keep us going. It is also important that you feel like your doctor is listening to you. If you don’t feel this way, it may be time to find a new doctor. Connecting with others who also live with A1AD can be extremely helpful, because they understand and can relate more of what you are going through and validate how you’re feeling without making you feel judged. This can be a great tool for coping.
Research, Research, Research.
Did I mention research? Researching A1AD and everything that comes with the illness is crucial. Books such as “Living with Alpha-1 Antitrypsin Deficiency,” as well as websites and support groups are just a few research tools available for those who live with A1AD.
Know Your Medications and Treatment Options.
There are several different types of medications doctors may prescribe to try to combat symptoms related to A1AD: augmentation therapy, inhalers, nebulizer medications, antibiotics, anti-inflammatories, as well as others.
Keep a List of Your Symptoms.
Keeping a list of the symptoms you have been experiencing can help you and your doctor determine what is going on and the best course of action. It can also help you remember what to tell your doctor during your appointment, as doctor appointments can be overwhelming and cause anxiety. Also, keeping track of your oxygen saturation level can be helpful to determine if it is regular or irregular as pulmonologists usually check this at appointments.
Know Risk Factors for Other Diseases.
Unfortunately, A1AD can also come with comorbidities, or other diseases. These include, but are not limited to: chronic obstructive pulmonary disease (COPD), emphysema, asthma, bronchitis, influenza and pneumonia. Make sure you know about these in case they come up while living with A1AD or breathing difficulties.
Be Kind to Yourself.
This is important! When you don’t feel well, remember it is OK to take time for yourself, whether it’s to sleep/rest, take a relaxing bath or turn down plans because you don’t feel well. Other people may not understand, but that’s OK. They may not know or exactly get what you are going through, but it is important for you to take care of your body however you think you need to.
It is hard to not feel too stressed, but it is important for those who live with breathing illnesses to try and decrease their stress as much as possible, as added stress can impact breathing. Light exercise (if you are up to it), yoga, reading, writing and coloring are just a few things you can do to try to relax.
Stay Mentally Positive.
One of the hardest parts of A1AD is not being able to do the activities you once could. This can lead to self-doubt, depression, stress and anxiety. It is important to stay as positive as possible for your health.
Improving your health and daily life requires an unwavering commitment to the principles and tenets we lay out in detail inside Living with Alpha-1 Antitrypsin Deficiency. The most important factor in putting A1AD on the defense is to make a commitment to finding answers if you haven’t already and do everything in your power to stay as healthy as possible. It’s important to remember everybody is different and something that works for you may not work for someone else.
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