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Hemophilia

* Information on this page was derived from several resources including Factor Health Management www.factorhealth.com, the Factor Health Management brochure, and the  NHF First Aid for School Personnel Brochure.

Hemophilia Factors

  • Individuals with bleeding disorders do not bleed faster. They bleed LONGER due to their body’s inability to clot adequately.
  • Affects all socioeconomic and racial groups equally
  • Severity level is consistent between family members
  • Bleeding episodes can occur spontaneously or after some kind of trauma.

The History

  • Earliest records documenting this disorder date back 2,300 years. Known as the “Royal Disease”. Queen Victoria of England was an obligatory carrier of the defective gene, consequently passing the gene to the royal houses of Spain, Germany and Russia.


  • In the 1800’s, blood transfusions were given to persons that had hemophilia to control their bleeding.


  • In the 1960’s, cryoprecipitate was discovered and was used for the treatment of hemophilia.


  • In the 1970’s, development of factor VIII and factor IX concentrates were used for the treatment of hemophilia.


  • In the 1980’s, HIV and HEPATITIS were discovered in the blood supply and many community members lost their lives as result of infection.


In the 1990’s, manufacturers developed and introduced to the community plasma-free concentrates (recombinant) because safety was the number one concern.

Today, children living with hemophilia live long, active, healthy lives thanks to the advances in medicine

Hemophilia is...

A rare genetic bleeding disorder caused by the absence or deficiency of one of the blood clotting proteins manufactured in the liver and found in the blood.

The most common types of hemophilia are:

  • Factor VIII (hemophilia A) deficiency
  • Factor IX (hemophilia B) deficiency

Hemophilia is classified as mild, moderate, or severe depending on the amount of clotting factor VIII or IX in the blood.

Normal 50-150% is normal
Mild hemophilia 6-49%
Moderate hemophilia 1-5%
Severe hemophilia <1%

Left untreated, hemophilia often leads to severe joint damage, permanent disabilities and premature death.
Hemophilia affects around 20,000 persons in the United States.
Almost exclusively male
Factor VIII, hemophilia A = 80%
Factor IX, hemophilia B = 20%
70% of the hemophilia population is affected by the severe level.
Hemophilia occurs in 1 out of 7,500 male births
50% of individuals affect are under the age of 20 years

Are You Having A Bleed?

Complaints of tingling, bubbling, pain, stiffness or decreased motion in any limb or appears to have a part of the body (usually a joint) that is swollen or warm to the touch or appears to favor an arm or leg more than usual or limps or refuses to use a limb.

Serious Bleeds are considered:
Intra-cranial
Spinal Cord
Throat
Intra-abdominal
Limb compartments (calf, forearm, psoas muscle)
Ocular

Joint Bleeds and Muscle Bleeds

  1. Treat with prescribed factor concentrate
  2. Rest
  3. Ice
  4. Compression
  5. Elevation

Nose Bleeds

  1. Position patient sitting straight up with head upright
  2. Pinch the bridge of the nose using firm continuous pressure for 20 minutes
  3. Apply a cold pack to the back of the neck
  4. Check with HTC team for medicine options

Mouth Bleeds

  1. Apply ice compresses with firm, continuous pressure for 20 minutes
  2. For Teeth- Apply a wet tea bag wrapped in gauze around the tooth
  3. Check with HTC team for medicine options.

Cuts and Scrapes

  1. Clean the cut, scrape or laceration with an antiseptic soap
  2. Apply firm pressure and elevate the body part until bleeding stops
  3. Apply a sterile dressing
  4. Apply an ice pack to the area over the bandage or dressing

Community Support

National Hemophilia Foundation: www.hemophilia.org
Find a listing of local chapters and Hemophilia Treatment Centers

Hemophilia Federation of America: www.hemophiliafed.org

Factor Health Management: www.factorhealth.com