ARTICLES / General /
Alpha-1 Antitrypsin Deficiency and Caregivers /
Other ArticlesBy Cheryl Ellis, Staff Writer
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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