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What are Bleeding Disorders?

Bleeding disorders refer to a group of blood conditions that involve a lack or deficiency of a clotting protein in the blood.  People with bleeding disorders have a tendency to bleed at times when others would not, or bleed excessively compared to unaffected people. The most well-known bleeding disorder is hemophilia, a largely inherited disease caused by a lack or an insufficiency of blood clotting protein called factor.  The most prevalent bleeding disorder is von Willebrand Disease, which is due to the deficiency of von Willebrand factor and affects factor VIII and platelets.  Some estimates suggest von Willebrand Disease may be as common as 1 per 100 individuals affected worldwide. There are other rare bleeding disorders which cause patients to suffer from frequent and prolonged bleeding.  Common symptoms of bleeding disorders may include: easy bruising (bleeding under the skin), frequent bleeding of mucous membranes in the nose (epistaxis) or mouth, easy bleeding following dental work, excessive menstrual bleeding in females (called menorrhagia), prolonged bleeding following surgery, bleeding into the joints and muscles.  Your doctor and nurse will provide you with educational materials on your particular condition. HANDI is the information clearinghouse for the National Hemophilia Foundation.  They can provide you with a full range of pamphlets and written material related to bleeding disorders.  HANDI may be reached by telephone, toll free, at 1-800-42-HANDI.  Also see the NHF website at www.hemophilia.org.

Special Joint Health Considerations for Patients with Bleeding Disorders

For patients with bleeding disorder, maintainingand enhancing good joint health is a critical health concern.  Typically, people who have severe hemophilia or other related bleeding disorders experience 25-30 bleeding episodes within the joints each year. Some patients experience repeated bleeding episodes into the same particular joints.  This is known as a target joint.  Over time, repeated joint bleeding can lead to arthritic, orthopedic problems that may cause pain and limit functioning.  Clinically, efforts are made to monitor joint health, encourage physical exercise that emphasizes strengthening and balance.  During comprehensive hemophilia clinic evaluation, our physical therapist, Kim Bardsley, PT,  evaluates and measures joint health and functioning, using the an instrument developed by the World Federation of Hemophilia.  Evaluation includes assessment for pain, swelling, and range of motion, with points given for deviations from normal joints, looking at each joint.  The joint score is monitored at each clinic evaluation.  Based on assessment of the joint score, your physician may adjust your treatment regimen to include an exercise plan, physical therapy, and possibly use of orthotics such as splints or surgical intervention.  We have attached a copy of the World Federation of Hemophilia joint assessment instrument. 

Special Dental Considerations for Patients with Bleeding Disorders

Maintaining healthy nutrition and weight are part of the overall health of people with bleeding and clotting disorders.  Being overweight puts additional stress on the joints, putting them at risk for additional bleeds.  Having a sedentary lifestyle can contribute to being overweight.  Therefore, our patients are encouraged to develop an appropriate fitness plan that is compatible with their overall health.  For these reasons, nutritional evaluation has been integrated into our evaluation during comprehensive hemophilia clinic with Helen Tayag, RD.  Nutritional assessment includes the Body Mass Index (BMI), a special formula for measuring body fat by looking at one’s height and weight.  Tips for improving weight, from changes in daily habits to lose weight or ways to supplement weight with different foods or nutritional supplements may be provided.

What are Blood Clotting Disorders?

Clotting disorders refer to a tendency for the blood to coagulate or clot when it should not, resulting in medical complications.  Uncontrolled, spontaneous blood clotting or thrombosis can occur spontaneously or may be provoked.  Thrombosis may be due to an abnormal blood protein and can be inherited.  Blood clots can be fatal but always require careful medical attention.  They can be life threatening and certainly life altering. One serious complication is deep vein thrombosis (DVT), which is a clot in an extremity.  Symptoms of DVT may include arm or leg pain, swelling or redness in the affected limb.  A second complication is pulmonary embolism (PE), which is due to a clot in the lung.  Symptoms of PE include difficulty breathing and chest pain often on one side of the chest while breathing.  A third complication is clotting in the heart, which results in a heart attack.   Symptoms include chest pain and pain radiating down the arm.  Blood clots can also occur in the brain, called a stroke.  Signs of stroke may include sudden numbness or weakness of the face, arm or leg; sudden confusion, difficulty speaking or understanding; difficulty seeking in one or both eyes, sudden difficulty walking, dizziness or poor balance, and sudden, severe headache with no known cause. These conditions require medical care as soon as possible.  Lastly, some women develop a blood clot during or after pregnancy.  Clots may also occur in the placenta resulting in fetal loss or abortion.  The cornerstones of management include accurate diagnosis, aggressive patient education, management of current symptoms and maneuvers to o help prevent future clotting.  For more information, please refer to the American Heart Association website,www.americanheart.org

Special Nutritional Considerations for Patients with Clotting Disorders

Patients who have clotting disorders must also pay attention to nutrition for several reasons.  First, obesity is a risk factor for development of blood clots.  Second, some patients with blood clots must be managed clinically with clot-busting medications.  These patients who are thromboprophylaxis, including low molecular weight Heparin or Fragmin must carefully watch their diet to make sure that it is balanced among food groups.  This is important to help maintain an appropriate INR.  Finally, staying active and on your feet can help with leg circulation, good for one’s health.   Please make sure to let your doctor know if you have questions or concerns about this aspect of your health.

Glossary of Key Terms

Trait or disease passed from one generation to the next.  Synonymous for hereditary
Trait or disease present in a family and its extended members.
Trait or disease that is present at birth.  Some congenital disorders are inherited and others are not.
Prescription of mechanical devices, lifestyle changes and medications to prevent blood clots
Prior to the onset of symptoms.  For example, primary prophylaxis in hemophilia is the regular administration of factor concentrate prior to the onset of bleeding.  For patients with a thrombophilia, it could be administration of blood thinners to patients who have not had a blood clot.
After the onset of symptoms.
Body Mass Index.  A formula which measures body fat that is determined by looking at one’s weight and height.  It may be used for children as well as adults.

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