At Penn Medicine, we don’t want a bleeding disorder to get in the way of the life you want. We help protect your health and ease your worries, so you can focus on the things that matter to you. We help you work, go to school, raise your family — and even play sports — as safely as possible.
Our team at the Penn Comprehensive Hemophilia and Thrombosis Program treats the full range of disorders causing unusual bleeding. We care for people with inherited or more rare, acquired types of hemophilia, von Willebrand disease (VWD), platelet disorders, and other clotting factor conditions tied to bleeding control.
Why Choose Penn Medicine for Bleeding Disorder Care?
Our team is continually trying to improve care for bleeding disorders. We take the comprehensive approach that evidence shows is best for inherited bleeding disorders.
When you choose our program for care, you can expect:
- Expertise: Like other teams at Penn Hematology, our program reflects a high degree of knowledge and skill. The hematologists, or blood doctors, in our program are leaders in caring for bleeding disorders. They’re joined by experienced nurses. Learn more about the hematologists at Penn Medicine.
- National recognition: We’re recognized as a center of care for hemophilia by the Centers for Disease Control and Prevention. That designation shows that we use the best available evidence to improve and offer all needed services. We extend this approach to all bleeding disorders.
- Complete care: We provide all the care you need for a bleeding disorder. Services include physical therapy for bleeding disorders and orthopaedic care. You also have access to social workers to discuss additional challenges, such as mental health, transportation to appointments, and insurance coverage.
- Dedicated services for women: Heavy periods and repeat miscarriages can have ties to blood disorders. Women with a diagnosis or symptoms can get evaluations for heavy periods and recurrent miscarriages through our Center for Women’s Thrombosis and Hemostasis (hemostasis refers to bleeding control). We can also arrange family planning help, given the inherited nature of some of these conditions.
- Support for teens and young adults: We help younger people make a smooth transition to our program when they’re ready for adult care. We often work with the Hemophilia and Bleeding Disorders Program at the Children’s Hospital of Philadelphia.
- Flexibility: Some people need to see us on a consistent basis, while others only require an appointment or two. If you get care elsewhere but have not received a definitive diagnosis or feel unsatisfied with aspects of your treatment plan, we can offer a second opinion.
- Innovation: We’re helping to develop promising new therapies for hemophilia, including gene therapy. Learn more about our hemophilia clinical trials.
Comprehensive Checkups for Inherited Bleeding Disorders
We typically recommend that people with inherited bleeding disorders come in for reevaluation on a consistent schedule. For milder disease, you may only need to see us once every year or two. For more severe disease, we may propose visiting every six to 12 months. We always recommend notifying us to discuss safeguards for surgeries you might need for other conditions.
During follow-ups, we check how the condition is affecting your body and learn if anything has changed with your overall health. While the nature of inherited blood disorders doesn’t change over time, you might develop other health conditions that could impact your care.
Such comprehensive visits typically include meeting with:
- Your hematologist
- Nurse
- Physical therapist
- Social worker
- Research coordinator (to discuss new trial opportunities)
Treatment for Bleeding Disorders
Some people with bleeding disorders have a mild form. They don’t usually have uncontrolled bleeding and don’t need ongoing treatment. They may just need to let doctors and dentists know about the condition before procedures. Our team may suggest treatments before surgery or labor to reduce bleeding risk. People with mild disease may also need to avoid certain medications including some pain relievers.
With severe, inherited bleeding disorders, you may need to consistently take special medication. This therapy prevents unexpected, extensive bleeding and damage to muscles, organs, and joints. Many people with severe bleeding disorders follow this regimen from childhood.
The type of treatment depends on the specific inherited bleeding disorder involved. Our team discusses all the options with you, including possible side effects. We also discuss exactly what each treatment involves, as you often administer it at home.
For acquired bleeding disorders, we treat the condition causing the changes or stop the medications tied to the problem.
Medications
We are now able to offer a range of medications for all forms of hemophilia. The medications fall under two categories to promote better clotting and bleeding prevention:
- Factor replacement: These medications replace the missing clotting factor with a lab-made version or clotting factor from donated blood. These medications are given by injection that you can learn to do yourself.
- Non-factor replacement: These medications take other routes in the body to prevent or stop bleeding.
Gene Therapy
While existing hemophilia treatments usually provide effective protection against bleeding, occasional episodes can occur without warning. The treatments can also feel cumbersome because of the method of taking them and the frequency.
We’re excited about the potential of gene therapy — adding, deleting, or correcting genes to tweak the instructions guiding the body. The first approved gene therapy treats hemophilia B, with other gene therapies for both hemophilia A and hemophilia B in development.
The effects of a single protective dose of gene therapy are intended to last years — possibly a lifetime. Studies during gene therapy development show that it can make remaining treatment easier and significantly improve quality of life.
The approved gene therapy is injected through an intravenous line. Treatment travels to the liver, where cells start making the missing clotting factor. The treatment has the potential to increase factor levels and lessen symptoms for people with moderate to severe hemophilia. Many patients are left with mild disease that needs therapy only before surgeries. Some people could even experience a full cure.
A Range of Care for Von Willebrand Disease
The type of treatment prescribed for VWD depends on the type and how severe it is. Treatment can include:
- Desmopressin: This medication spurs the body to release more clotting factor. It comes as a nasal spray or an injection.
- Factor replacement: This injectable treatment provides working clotting factor — from processed blood or made in a lab — to the body.
- Antifibrinolytic drugs: These medications slow natural clots in the body from breaking down, to help slow or stop bleeding.
- Hormonal contraception including birth control pills: We may recommend these pills for heavy menstrual bleeding. They help increase clotting factors in the blood.
Treating Other Clotting Factor Deficiencies
Treatment for rare clotting deficiencies depends on the type and the severity. Examples of these conditions include deficiencies in the following clotting factors:
- Factor I (fibrinogen)
- Factor II (prothrombin)
- Factor V (labile factor or proaccelerin)
- Factor VII (stable factor or proconvertin)
- Factor X (Stuart-Prower factor)
- Factor XI (plasma thromboplastin antecedent factor)
- Factor XIII (fibrin-stabilizing factor)
Some people need medications to replace the missing or defective protein. Others receive plasma, the liquid part of blood. We may also turn to medications that slow clots from breaking down.
Treating Platelet Function Disorders
Treatment for acquired platelet function disorders is similar to that of other bleeding disorders, with our team addressing the cause. People with inherited platelet function disorders may need medications or transfusions of platelets before medical procedures.
Make an Appointment
Please call 800-789-7366 or make an appointment.