Posts Tagged Alpha-1

Can COPD be inherited?

March 27th, 2013 | Author: COPD Coach

Dear COPD Coach,

I am 40 years old and have noticed recently that I have been getting out of breath more easily than I used to. I do not exercise like I should, so maybe I am just out of shape. What worries me is that I have a history of COPD in my family. A grandparent on each side of my family died of lung problems, and my mother was diagnosed a few years ago as having COPD. I am really afraid to seek some help because I know what they are going to say. Here is my question. Can COPD be inherited?

–Looking for answers

Dear Looking,

We know one inherited form of COPD. It is called Alpha-1 Antitrypsin Deficiency. It is inherited from both your parents, however if only one parent is a carrier, you could well be a carrier also. Alpha-1 was discovered 50 years ago, and because it is indeed inherited, it is a prime candidate to test for especially if there is a history of lung disease in the family.

Alpha-1 is the lack of a protein in the blood called Alpha-1 Antitrypsin. This is a protein that is produced in the liver and is used by the body to protect the lungs from inflammation caused by an infection or irritants like tobacco or pollution. If you have low levels of this protein, or the protein you make is abnormal and cannot get out of the liver, lung disease can occur. Interestingly enough, it has been documented that cigarette smoke has a tendency to render the protein inactive, so smokers who actually do not have Alpha-1 simulate the disorder through cigarette smoke.

Source: www.alpha-1foundation.org

Source: www.alpha-1foundation.org

The test for Alpha-1 is a simple, free blood test that you can actually do at home. For information on how to obtain a home test kit call our information line at 866-316-COPD (2673). Here is the important thing to remember: If you are an Alpha-1, then you also carry the gene which can then be passed on to your children. It is our firm belief that ALL people with COPD as well as those who have a history of lung disease in their family should be tested for Alpha-1!

As to whether other forms of COPD are inherited, we believe the answer is probably yes, we just do not have the clinical proof as of right now. We have recently completed enrollment in a COPDGene® Study, which we hope will begin to answer that exact question. The thought is that if we can find the genetic link or cause, new targeted treatments can be developed and ultimately a cure! In fact, there is a treatment for Alpha-1 that has been shown to slow the progression lung damage, but it is not a cure.

As for being afraid to find out if you indeed have COPD, my advice would be that it would be much worse if you didn’t find out. COPD is now the 3rd leading cause of death in the United States, and most people with COPD are not identified until their symptoms are so bad that they can no longer be ignored. While COPD is not curable, if diagnosed early, with proper treatment and lifestyle changes (avoiding tobacco and irritants) you prognosis is greatly improved and the decline can in most cases be drastically slowed down.

The most immediate step you can and should take is if you smoke, stop smoking and avoid second hand smoke. If you are exposed to other irritants such as strong chemicals or pollution, stop or limit your exposure. Speak with your doctor about your symptoms and get appropriate medication if required. Lastly, stay active and establish a regular exercise routine (speak with your doctor about what exercises would be safe and beneficial).

COPD is not necessarily a death sentence, but it is for many a call for a lifestyle change. The steps you take now, can greatly extend your life and allow you to remain active much longer!

Hope this helps, and keep us posted.

–The COPD Coach

Ask the Expert is aimed at providing information for individuals with COPD to take to your doctor, and is not in any way intended to be medical advice.

If you would like to submit a question to the Coaches Corner email us at coachescorner@copdfoundation.org. We would love to hear your questions and comments. You can address your emails to any of the following: COPD Coach, Caregiver Coach, COPD Doctor or COPD RT.

On Rare Disease Day, patient advocates fear major US healthcare budget cuts

February 28th, 2013 | Author: Katelyn Turner

Did you know that today is Rare Disease Day? It’s observed by millions of people around the world. While celebrating progress made in detection

www.alpha-1foundation.org

and treatment, people with rare diseases, including COPD caused by Alpha-1 Antitrypsin Deficiency, are concerned about the “sequestration” budget cuts about to hit all areas of U.S. Government spending.

Across-the-board budget cuts for federal agencies including the National Institutes of Health (NIH) and Food and Drug Administration (FDA) are scheduled to take place tomorrow, March 1 — and could have a major impact on rare disease research and the development of treatments.

“We are concerned that major across-the-board budget cuts may set back the exciting progress we have made in recent years,,” said John Walsh, president & CEO of the Alpha-1 Foundation. The Foundation has long been an active member of the National Organization for Rare Disorders.

Click here to read more.

Questions About Insurance

September 5th, 2012 | Author: COPD Coach

Dear Coach,

In April I was admitted to the hospital with bilateral pneumonia. I was told when I left hospital Read more…

May is Asthma Awareness Month

May 4th, 2012 | Author: Katelyn Turner

Did you know that May is Asthma awareness month? Read more…

Pilot Study to Improve Indoor Air Quality

March 9th, 2012 | Author: Katelyn Turner

Recently, a group of individuals with COPD and Alpha-1 participated Read more…

Living Life to the Fullest

February 10th, 2012 | Author: Katelyn Turner

Chris Huckstepp says he first noticed deterioration in his lung function in 1994. Read more…

Be Your Own Advocate!

January 20th, 2012 | Author: Katelyn Turner

In Ken Samonds’s eyes, wife Carolyn, Read more…

Should I See a Pulmonary Doctor?

December 14th, 2011 | Author: COPD Coach

Dear COPD Coach,

I have a question I hope you can help me with. Read more…

Out of Breath

November 23rd, 2011 | Author: COPD Coach

Dear COPD Coach, Read more…

Out of Breath

October 28th, 2011 | Author: Katelyn Turner

Elaine Bray, who was diagnosed with Alpha-1 Antitrypsin Deficiency in 2003 Read more…