(Ages 12 to 18 years)1
The teen years are times of rapid growth and change for children – a time that affects their body and their emotions. Teens face a lot of pressures and having a bleeding disorder adds to that pressure. For children, growing up with a disorder, such as hemophilia, affects the way they see themselves in the world, and can present extra challenges as they develop. For parents and other family members, having a child with a special need can create a sense of wanting to protect him or her from the world. Talk through the valuable information here with your teen to help him or her better understand how to manage his or her bleeding disorder.
How can I avoid pain
Some ways to ensure you avoid pain include:
- Use gear (like helmets, knee pads, elbow pads, and shin guards) to avoid injuries
- Ask your hematologist if you should use a pain-relief cream before your infusions to numb the area where the needle will be placed.
- Treat bleeding episodes with prescribed factor, as instructed, immediately to prevent ongoing bleeding and further damage. Bleeding causes damage. Repeated damage from bleeding episodes can cause chronic pain and permanent joint injury.
Do not take any medication that contains aspirin or an NSAID (a nonsteroidal anti-inflammatory drug) These medications can prolong bleeding. Read the label on any medication you use to see what’s in it. Also, check with your pharmacist when a medication is prescribed. Aspirin also can be listed as ASA (acetylsalicylic acid).2
How do I identify a bleed
You may ask yourself the following questions to help determine if you’re experiencing a bleed.
- Have I been less active than usual?
- Is my appetite the same as usual, or have I been eating less?
- Have I been sleeping more than usual? Or have I been unable to sleep?
- Am I limping?
- Is there a part of my body that I seem to protect, because it’s sore or hurts?
- Is there a part of my body, such as my arm, leg, my stomach or side, that I’m using less or that I’m avoiding using?
How can I work through the pain
If you’re having pain, treat it right away. Don’t be afraid to let your friends or others know that you need to treat any pain right away.
- Use the Rest, Ice, Compression, and Elevation (RICE) method if you have an injury
- Be a partner with your healthcare team to learn what they suggest
- If you’re really active in sports, ask your healthcare team if there are any proactive treatment options.
- If your healthcare team orders pain medication for you, follow the instructions on the label.
- Ask yourself these questions about the medication to see if it’s working for you:
- How long am I comfortable after taking the medication?
- Does it make me sleepy?
- How many times do I need to take the medication in order to reduce pain?
- Does my pain seem to be better or worse while I’m taking this medication?
- If your pain doesn’t go away within a specific timeframe developed by you and your doctor, contact your hematologist to discuss it with him or her.
By age 18, hopefully you’ll be an independent individual who can make medical decisions for yourself. That includes ordering your own factor, infusing your factor, following your hematologist’s orders, filling out treatment logs, and taking care of your body. Remember, it’s your body and your hemophilia. As you continue to mature, you can find additional information later in this guide.
For additional information about hemophilia and your teen’s increased involvement in his or her care, pain management, nutrition, dental care, social interactions, exercise and entrance into adulthood, download:
- 1Johnson M, Gorlin JB. "Child development with a bleeding disorder and transition." Nurses' Guide to Bleeding Disorders. National Hemophilia Foundation. 2013.
- 2Medical and Scientific Advisory Council of National Hemophilia Foundation. Recommendation #175: "Guidelines for emergency department management of individuals with hemophilia". October 2006. hemophilia.org/sites/default/files/document/files/175.pdf. Accessed Aug. 9, 2017.