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Alpha-1 Antitrypsin Deficiency and Caregivers

By Cheryl Ellis, Staff Writer

(Page 2 of 3)

DIAGNOSIS AND RESEARCH

The Alpha-1 Association has made diagnosis and participation in research efforts easy for those interested.  While the majority of Alpha-1 testing by doctors is done when there are problems noted (lung disease without an apparent cause or history), anyone can be tested and be guaranteed of confidential results.

The website www.alphaoneregistry.org not only houses confidential information on those who carry the gene, but those who are living with Alpha-1.  By registering, you begin the first stage in learning your genetic predisposition, and helping in research.  The DNA and Tissue Bank at University of Florida accepts blood and tissue donations to further research links between Alpha-1 and other processes.  You do not have to be diagnosed with Alpha-1 to donate, but you will be helping research efforts.  Contact them toll free at 1-866-284-2708 to see what research can offer you, and vice versa.

CARING FOR THE ALPHA-1

With any lung imbalance, it is important to follow common sense.  Cessation of smoking and staying away from secondhand smoke and other pollutants is primary.  Talk to the doctor about physical exercise instruction from a licensed physical therapist to determine how to build lung capacity without sapping endurance.

Monitoring allergies and exposure to other allergens is a “given.”  Yet, caregivers and loved ones often ignore subtle allergens such as mild food allergies, soaps and colognes and cleaning solutions that do the job but leave one gasping for air.  Exposure to these allergens may be eliminated within the home, but visits to the doctor, grocery or shopping center are difficult to control.  When encountering these possible irritants, move away quickly to reduce the effect.

If your loved one qualifies for treatment by augmentation therapy (IV infusions of human plasma containing Alpha-1 antitrypsin protein), caregivers may be trained to administer therapy.  Knowing how much you and your loved one are capable of handling at home will make for better therapy.  Proper nursing instruction and supervision are required.  If you cannot envision being able to handle at-home therapy, be frank with staff and continue treatments at a professional center. 

 

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