Post 13: How possible is it that a cure for hemophilia will be discovered?

It’s highly unlikely that a cure for this genetic disease will be discovered. Perhaps in the future through gene therapy it will be possible to better treat hemophiliacs, but it’s impossible to cure it. Similar to other genetic disorders, hemophilia is integrated in one’s DNA (deoxyribonucleic acid) and, of course, genes. Since we can’t change either, we can’t fully extinguish the illness.

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Post 12: Organizations to help a family cope with a child’s disorder

MDJunction (a forum)

HFA (Hemophilia Federation of America)

The Haemophilia Society

EHC (European Haemophilia Consortium)

First Step

National Hemophilia Society (a list of organizations for individual states)

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Post 11: What limitations do hemophiliacs have?

Hemophiliacs need just be careful. Since they bleed/bruise very easily, it’s best to avoid dangerous activities such as rigorous contact sports. (Football, wrestling, etc.) Hemophiliacs should also think twice about biking or rollerblading, as one may fall. Fortunately, hemophiliacs don’t have too many limitations; they can live pretty normal lives.

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Post 10: What is every day life like? What is the quality of life?

A hemophiliac’s quality of life is much like others’ qualities of life. Of course, hemophiliacs must take extra care and think twice about certain routines, but nothing major. Hemophiliacs just need to be cautious and careful. Just like everyone else, they should exercise regularly (with the exception of contact sports — football, hockey, etc.) Hemophiliacs should also avoid certain drugs like aspirin, Motrin, Advil, and heparin. These drugs should be avoided as they decrease one’s blood’s ability to coagulate. Common sense should also tell one to protect his or her kid(s) (if they happen to be hemophilic) by giving them proper safety devices (knee pads, helmets, etc.) as well as making sure there’s nothing dangerous or sharp in or around the house.

Additionally, as I stated in an earlier post, hemophiliacs can expect to live almost as long as unaffected people.

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Post 9: How can hemophilia be treated?

Hemophilia can be treated with an array of drugs. The entire purpose of these treatments are to replace the missing clotting factors into one’s bloodstream. These drugs can be administered both on a normal schedule and/or when needed.

Common drugs used for treatment of hemophilia A:

  • Advate (contains naturally-occuring proteins that assist in clotting)
  • Autoplex T (coagulant)
  • Cyklokapron (preserves blood clots)

There are, of course, many more drugs on the market. Click here to see more. Additionally, there are drugs manufactured exclusively for hemophilia B. Click here for a list of those.

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Post 8: What is the life expectancy of a hemophiliac?

The life span of a hemophiliac varies with not only the the severity of the disorder but also treatment. Mild cases will, of course, live longer than those with an extreme case. Additionally, one who is treated correctly will live longer than someone without adequate help. On average, however, a treated hemophiliac can expect to live a relatively long life, just ten years less than one unaffected by hemophilia.

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Post 7: Symptoms of hemophilia

Most of the symptoms related to hemophilia deal with bleeding and/or bruising. Here are some specific scenarios:

  • Bruising easily
  • Spontaneous nosebleeds
  • Blood in pee
  • Bleeding into muscle after getting a shot
  • Internal bleeding
  • Heavy bleeding during a boy’s circumcision
  • Prolonged bleeding from minor injuries such as paper cuts, losing a tooth, etc.
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