My sister and I being very involved in the world of hemophilia, as well as education, we get a lot of questions. We are here to answer some of the most common questions we are asked. Feel free to comment below and ask any other questions we have not answered today.
What is hemophilia? Hemophilia B?
The short answer…hemophilia is a rare bleeding disorder in which a person's blood does not clot properly. Many different clotting proteins help the blood clot; hemophilia b has a deficiency of clotting factor 9.
Is it contagious?
No. Hemophilia is not contagious.
Is hemophilia genetic?
The majority of the time, hemophilia is genetic. However, there is something called spontaneous hemophilia, which means that there is no family history of this bleeding disorder, and the clotting factor spontaneously mutated.
Do people with hemophilia have to take medication?
Yes. Now depending on the type and severity, dosage and frequency can vary. More severe cases need a prophylaxis treatment in which medication is given more frequently.
How is the medication given?
Most medications are given through a vein. Sometimes in smaller children, a port is surgically placed under the skin on the chest and accessed sterilely to administer the medication.
What happens if there is an injury?
That depends on the injury. If it is a cut or laceration, it will take longer to stop bleeding than a person without hemophilia. Bruising is very common. With hemophilia b, there is also a risk of joint bleeds.
What is a joint bleed?
A joint bleed is just that. Someone with severe hemophilia b (the clotting factor is less than 1% functioning) can injure a joint (twisting an ankle, falling on a knee) that will cause internal bleeding within the joint.
Can someone grow out of this?
Hemophilia, unfortunately, is not something people will grow out of.
My child is about to go into kindergarten. He was delayed in a few developmental milestones and also has medical requirements like medicine throughout the day. Do I need an IEP for that? Who do I ask?
Reach out to your school's program specialist, teacher, or even the office manager (they would be able to direct you) to identify who you would need to meet with. Bring all medical paperwork that you're comfortable sharing, and you would meet with the teacher and program specialist as well as the nurse if needed. Here you'd discuss steps they take to cover your son or daughter's needs. If they have a medical diagnosis, this would be something to share here. Depending on your state laws, your team would help you move forward with an IEP, 504, or even being observed for tiered interventions depending on the time of year. My only advice is to write down your questions before attending a meeting. You'll probably feel weird sitting in a meeting with a bunch of questions written down, but it's better than forgetting something significant!
How do I initiate getting my child an IEP?
A: We all want students to be independent and function independently to the best of their ability, but when a student struggles significantly compared to their same-aged peers, that can be difficult to watch as a parent. IEP's are not something that can just be handed out. There are different ways to qualify based on your state laws, but we must abide by laws. In Florida, we must provide interventions to help close those gaps, so my first question is: Has someone been doing RTI/MTSS with fidelity with your child? If not, you need to start here and ask why! If you have a medical diagnosis from a doctor, you will need to meet with the program specialist to discuss the options. Again, we have laws we must abide by, so bring documentation. If medicine or disability has specific effects, they may be able to give your child accommodations. But again, that's a team decision you need to talk to the school about.