About Bleeding Disorders (BD) 

Bleeding disorders are life-long, genetic conditions that make it harder for a person’s blood to clot. Bleeding can occur under the skin, and into muscles, joints, or elsewhere. Provided that people with BD are stable and maintain their established treatment protocols, there is nothing about the condition that should preclude them from receiving behavioral health treatment in an inpatient/residential setting. People who are stable and well-maintained on their medication typically live in the community and do not require any medical supervision related to this condition. They typically lead full, active, and independent lives. There are no restrictions for activities except participation in contact or collision sports/activities that could result in significant physical injury. 

People with BD work with their medical teams and are trained to recognize the early signs of bleeding, which are often not visible. It is important to listen when someone with a BD says that they are having a bleed whether or not you see any visible signs of a problem.

Bleeding Disorder Medications

Many people with BD use medication that requires some form of intravenous access, such as use of a butterfly needle for an IV push, or a subcutaneous injection. The infusions used to treat BD are fast (usually less than 5 minutes), safe (are not associated with adverse events), do not require IV poles, hanging IV bags, or pumps, and do not typically require any medical oversight or monitoring that would take them away from the facility. The subcutaneous injections are similar to treatments used by individuals with diabetes. Patients are usually taught to self-administer their BD medication during elementary school. Some individuals with milder types of BD may use oral medication or nasal sprays for treatment of bleeding episodes. All of the aforementioned treatments are extremely effective, and the majority of patients are completely self-sufficient with their care and infuse/inject their own medication when needed. Use of these medications is part of these individuals’ normal activities of daily living.

Most medications for BD cannot be dispensed by a retail pharmacy and require the use of a specialty pharmacy. Most patients have pre-existing relationships with specialty pharmacies that can provide access to their BD medications.

Internal bleeding causes pain. Clotting medication is not a pain reliever but is taken to stop the bleeding. Treating bleeds early avoids complications, long-term disability, and gets people back to their regular activities. People with BD do not require medical monitoring or laboratory work on a consistent basis.

Manufacturers typically recommend storing products in the refrigerator, although many are stable at room temperature for a limited time. Products should never be frozen. Medications requiring refrigeration should be kept in a refrigerator in the same area where other medications are stored. Do not let a refrigerated product come to room temperature and then refrigerate it again.

Key Points to Remember:

• Most bleeds are not emergencies: Most accidents, even without visible injury, should be addressed with first aid, rest, and ice. Consult the patient’s emergency plan and call the hematology team if you need help.

• You have time to figure it out: People with BD do not bleed faster than others, just longer. You have time to check the treatment plan, or call the hematology team, if necessary.

• Trust the patient’s self-assessment: When a person says that they are in pain or have a bleed, trust them. People with BD are experts in their condition. Ask the individual if they need to get a dose of their medication.

• Use acetaminophen to treat pain: Never give someone with a bleeding disorder aspirin, ibuprofen or naproxen (Advil, Aleve, Motrin). These medications make the bleeding worse. Only use acetaminophen (Tempra, Tylenol). When acetaminophen is inadequate, the selective COX-2 inhibitor celecoxib (Celebrex) may be another option for pain control, provided that it is prescribed for the patient by a healthcare provider.

• Emergencies: Some bleeds require prompt, emergency care; emergency treatment recommendations may be sent with a patient to the treatment facility. Call the patient’s hematology team and 911 immediately, if the person injures their:

  • Head

  • Abdomen

  • Throat

  • Eyes