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Hemophilia

Bleeding Disorders and Everyday Life: Coping With Hemophilia

Hemophilia isn’t a short-term problem. But that doesn’t mean it has to take over your or your child’s life. With the right planning and prevention, your lives can be as rich and happy as anyone else’s.  

It starts with you. Knowing how to manage health needs—from assistance at school (or work) to treatment for sudden bleeding—will be critical for staying healthy. Also, knowing how to cope with challenges and advocate for yourself or your child can boost your confidence. 

The Orthopaedic Hemophilia Treatment Center (OHTC) at OIC is here to help you and your child every step of the way.


 

Emergencies: Be Ready for Anything

Sometimes bleeds happen even when you’re being extra careful. No matter where this happens, it’s important to be prepared. That means having the right tools on hand. These tools might include: 

Medical ID: A bracelet, necklace, or other form of identification can alert first responders—like emergency medical technicians or paramedics—to your or your child’s special medical needs.  

The care providers at the Orthopaedic Hemophilia Treatment Center (OHTC) at OIC can provide you with recommendations for the right medical ID for patients of all ages. 

Emergency Contact Information: In case you or your child are unable to communicate with first responders for any reason, make sure emergency contacts are easy to find.   

This can be as simple as carrying a laminated card with this information on it. Having multiple copies—such as one for a wallet, purse, bag, and backpack—can make it easier to have it on hand at all times.

It’s Nice To Have ICE

Special Tip: When you’re putting emergency phone numbers into the contacts of your or your child’s cell phone, label the number as “ICE - [Name of contact.]” ICE stands for “in case of emergency,” and first responders know to look for it. 

Some smartphones also allow you to add ICE information to the lock screen so that emergency personnel can access it easily if needed. 

Copy of Important Health Information: It might also help to have a flash drive on hand containing secure copies of important health information.  

That way, if you or your child needs to receive emergency medical care someplace other than the Orthopaedic Hemophilia Treatment Center, care providers can access this important information in order to provide the specialized care needed.

Where can you get a secure flash drive? Ask OIC. The American Thrombosis and Hemostasis Network has a program—called ATHNready—that helps member hemophilia treatment centers, including the OHTC at OIC, provide these secure flash drives to patients.


 

School Accommodations

As a parent, it’s normal to feel worried about how your child’s bleeding disorder might impact their well-being at school. You’re likely already taking steps to keep in contact with school officials—such as the principal, teachers, and school nurse. But your child might also benefit from having a formal accommodation plan in place. 

Depending on your child’s needs, they might be eligible for an Individual Health Plan (IHP), a 504 Plan, or an Individualized Education Program (IEP). No matter which plan your child needs, the team at OHTC is ready to help you and your child’s school put the right services in place. 

Individual Health Plan (IHP)

  • Intended for students with medical needs that impact day-to-day functioning at school
  • Created by you and your child’s care provider
  • Provides the school with any necessary information about your child’s bleeding disorder
  • Outlines your child’s healthcare needs—both routine and emergency—such as medication instructions 

504 Plan

  • Intended for students whose disabilities hinder their ability to learn in the general school environment
  • Has a broader definition of disability than IEPs
  • Created by a team that might include you, your child’s teachers, and the principal
  • Ensures that your child receives services or accommodations to meet any educational needs—such as permission to leave class as needed for self-infusion in the nurse’s office 

Individualized Education Program (IEP)

  • Put in place for students whose disabilities qualify them for special education services
  • Created by a team that typically includes you, your child’s teachers, a special education teacher, a school psychologist, and a school district special education services representative
  • Outlines your child’s learning goals as well as steps that will be taken to meet those goals
  • Includes information about accommodations and support services your child is eligible to receive

 

Financial Counseling

Treating hemophilia and other bleeding disorders can be expensive. At OHTC, we believe that everyone who comes through our doors should be given the tools they need to make the best choices they can for their hemophilia treatment. 

This is why, in addition to offering many hemophilia medications at discounted prices in our 340B Outpatient Pharmacy, we also provide detailed financial counseling to patients or their parents and loved ones. We want to help our families who are touched by hemophilia to make informed financial decisions about healthcare. 

Our dedicated team at the Orthopaedic Hemophilia Treatment Center at OIC is ready to help you and your child navigate the day-to-day challenges of managing a bleeding disorder.