myStory
Share your story with people who share the same condition as you. Read more about this program and choose to be part of this program.

• myStory Request Form

IS SURGERY RIGHT FOR ME?
Take a brief quiz to see if you should consider surgery. Download self-assessment questions and questions to ask you doctor.

• Self-assessment questions
• Questions to ask your doctors

HEMOPHILIA & JOINT HEALTH
Find out more about hemophilia and joint health, including preventing and managing joint bleeds. Watch animations showing what happens when a joint bleeds. Listen to a hematologist discuss joint health.

• Hemophilia
  Hemophilia is a hereditary condition, in which the blood does not clot normally. Learn about clotting “factor” proteins, types of hemophilia and how the severity of hemophilia is assessed.

• What is hemophilia?
• Inheriting hemophilia
• Severity of hemophilia
   
  
• Inhibitors
  Some patients with hemophilia may develop antibodies to factor replacement therapy called inhibitors. Learn more about the risk of developing inhibitors, how inhibitor levels are measured, and how it might effect management of hemophilia.
• What are inhibitors?
• Risk of developing an inhibitor
• Tests for and types of inhibitors
• Treatment for hemophilia with inhibitors
  
  
•  Joint Health
  Keeping joints as healthy as possible is important for everyone, but especially for people with hemophilia. Bleeds in joints may cause pain, reduce mobility and may cause progressive joint damage. Learn about managing these issues.
• Types of bleeds
• Joint bleeds
• Muscle bleeds
• Serious or life-threatening bleeds
• Signs and symptoms of acute bleeds
• Physical activity and joint health
• Physical activity
• Guidelines for stretching exercising
• Guidelines for exercising after a bleed
• General stretching program
• Tips to avoid injury while exercising
• Managing acute bleeds
• R.I.C.E.
• Factor replacement therapy
• Plan ahead for emergencies
• ER Help Sheet
• Wallet treatment card
• Emergency pack
• Seeking emergency room treatment
• What to do in the ER
   
• Managing Joint Pain
  Keeping joints healthy and managing bleeds is important. Some of the options that can help relieve your pain include maintaining a healthy joint through exercise and managing your body weight. R.I.C.E., supporting the joint and medication can also help control pain.
• Physical activity
• Body weight & nutrition
• R.I.C.E.
• Support the joint
• Types of support devices
• Medications
  
  
• Joint damage
  Watch animations of a joint at different stages following a bleed. Hear a hematologist talk about the condition.
• Normal joint
• Acute bleeding
• Chronic synovitis
• Progressive arthritis

SURGERY
Learn about the benefits and risks of surgery. Hear insights from doctors and real patients who have undergone surgery.

• Benefits & Risks
  Learn more and weigh the pros and cons from a doctor’s point of view. See what it’s like from a patient’s perspective.
• Benefits
• Hear from patients about the benefits.
  (Individual results may vary).
• Risks
• Hear from a patient’s father.
  (Individual results may vary).
• Signs you should call your doctor
• Infections
• Bleeding risks
• Blood clots (thrombosis)
   
• Before Surgery
  Understand and see some of exercises you may expect as you ready for surgery and your return home. Listen to a patient and doctor. Download exercises to review with your HTC team.
• Months before surgery (pre-surgery physical therapy)
• Exercising to get ready for surgery
• Shoulder exercises
• Elbow exercises
• Knee exercises
• Hip exercises
• Ankle exercises
• Understanding joint physical therapy

• Weeks before surgery
• Preparing your home
• Preparing your home before surgery
• 24 hours before surgery
• 24 hours before surgery
• Immediately before surgery
  
  
• Non-Orthopedic Surgery
  Overview of common minor non-orthopedic procedures
• Minor non-orthopedic surgical procedures
• Central venous access device (CVAD) insertion
• Dental procedures and biopsies
  
  
• Major and Minor Orthopedic Surgery
  Find out more about the types of orthopedic procedures. Listen to and see what they are all about.
• Major and minor orthopedic surgery
• Joint aspiration (arthrocentesis)
• Synovectomy
• Synoviorthesis/ radiosynovectomy
• Arthroscopic synovectomy
• Open synovectomy
• Joint replacement (arthroplasty)
• Knee replacement
• Hip replacement
• Shoulder replacement
• Elbow surgery
• Ankle joint fusion (arthrodesis)
   
• After Surgery
  The success of a surgical procedure is often determined after the surgery. Learn about how long you may need to be in the hospital, and what your physical therapy program might be like. Hear from a doctor, and get a real-life perspective from patients and a parent.
• Immediately after surgery
• Length of hospital stay
• Physical therapy
• Physical therapy & follow-up
  Hear from a physical therapist, doctor and patients.
• Chemical or radiosynovectomy
• Surgical synovectomy
• Shoulder replacement
• Elbow surgery
• Knee replacement surgery
  Hear from patients who had this surgery.
• Hip replacement
• Ankle joint fusion (arthrodesis)
• Post-surgery exercises
• Exercising after surgery
• Shoulder exercises (2)
• Elbow exercises
• Knee exercises (2)
• Hip exercises (2)
• Ankle exercises
• Ankle exercises (2)

Insurance
Important information about health insurance is covered here. You’ll find questions for your provider, and other important insurance considerations.

• Overview
• Questions for your provider
•  Considerations
• Coverage
• Insurance coverage
• Planning coverage
• Lifetime Caps
• Pre-approval

Resources
Find out more about other websites, HTCs, and the healthcare professionals who helped make this site possible. Download a Glossary of terms used in this site and in treatment of hemophilia.

• Links
  Get access to a valuable list of links to national, international, and regional or state hemophilia patient advocacy sites and other orthopedic surgery sites.

• HTCs
  Download a list of Hemophilia Treatment Centers.
• HTCs 
• Biographies of Contributors 
• Amy D. Shapiro, MD
• Thomas C. Hofstra, MD
• Edward Hellman, MD
• Stacie Akins, PT 
• Glossary
  Download the glossary of terms used throughout this website to better understand their meaning.
• Glossary 
• References
  Download a list of the references for the website.
• References 

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