Frequently Asked Questions
Frequently asked questions for chILD:
Was my child born with chILD?
We don't understand all of the causes of chILD. Some children are affected at birth. Still others are not affected until later in childhood. There are some children that appear to be perfectly healthy until they catch some kind of other illnesses, (ie: colds, RSV, and or Bronchiolitis).
Certain forms of chILD (such as surfactant problems) are inherited through genes. Without more research, it will be difficult to determine the role genetics may play in other forms of chILD.
How do I learn more about chILD ?
The information about chILD is limited by the number of research studies that have been done to date. However, there are a few things that you can do:
- check out our website, www.childfoundation.info - we're working on getting as much information posted there as possible. This non-profit group is comprised of families affected by chILD. The website has a list of journal articles written about chILD.
- ask your pediatrician for more information - however don't be surprised if they don't have a lot of information. chILD is rare and not every doctor has had a chance to learn about it. If there is interest, your doctor can contact some of the research doctors for more information. Check out the www.childfoundation.info for contact information.
- Chat with other chILD families on the Yahoo! Chat site. This email group is made up of families across the world who are tackling chILD. http://health.groups.yahoo.com/group/InterstitialLung_Kids/
How do I help?
There are many way you can contribute - please see the Children's Interstitial Lung Disease Foundation (chILD Foundation) Web Site for more information on how you can help support our research efforts.
Frequently asked questions for Alpha-1
What is involved in Testing for Alpha-1?
Testing for Alpha-1 is simple, quick and highly accurate. You can be tested by blood (finger stick or blood draw), or a mouth swab test.
Who should consider being tested?
If you have signs that suggest alpha-1 (family history of Alpha-1, specific symptoms or any of the identified medical problems), you should consider being tested.
What are the Potential Benefits and Harms of Genetic Testing?
Benefits:
- Allow you to increase your knowledge of Alpha-1 and awareness of your personal risk
- Provide information for future health care decisions
- Allow you to take steps that may slow the progression of Alpha-1
- Assist you and your family in making decisions about work, lifestyle and having children
Harms:
- May be personally unsettling
- May affect your ability to get health and life insurance
- May influence willingness of employers to hire you
- May create stress in your family
- May increase your personal health care costs
What about the children of a person who has Alpha-1 or who is a carrier of Alpha-1?
People with Alpha-1 (ZZ or SZ) will pass one of their defective genes (S or Z) to each of their children. Carriers (MZ or MS) may pass their defective alpha-1 gene (S or Z) to their children.
If a carrier (MZ) has a child or children with a person who has normal alpha-1 genes (MM), each child has one chance in two (50% risk) of being a carrier (MZ). There is no risk that any of the children will have Alpha-1.
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