A bleeding disorder can be difficult to discuss, whether it is yours, your child’s, or another family member’s. Symptoms of bleeding can confuse—and even frighten—the people around you… and possibly may be mistaken for signs of abuse or other serious conditions.
But, of course, it is very important that the people around you understand how to address your or your child’s situation in case of a bleeding episode. Offered here are some basic discussion guides to simplify your discussions with people at school, play, or work. The doctor/nurse discussion can also be a useful tool to get answers for your own bleeding disorder questions.
This discussion guide can be used during visits with your doctor and other members of your healthcare team. It includes questions you might want to ask in a first visit to your doctor.
Questions to ask:
- What caused me to have a bleeding disorder?
- Is this disease contagious?
- Will I pass this disease on to my children?
- How will this bleeding disorder affect me?
- What kind of treatment do I need?
- Will the disorder hurt?
- Will treatment hurt?
- How many treatments will I get?
- How often will I have to see a doctor?
- Will I miss any school or work?
- Will I be able to participate in all the activities I love — exercise, sports, travel, etc.?
- Will my disease ever go away?
- Will my symptoms go away?
- Are there any side effects of the treatments?
- What happens if I miss a treatment or forget to take my medicine?
- What if the treatment doesn’t work?
- What should I do if I have a bleeding episode?
- Do you have any tips for telling the people around me about my disorder?
- Where can I find more information about my disease?
- Will I be able to have children?
Any time a child with a bleeding disorder is introduced to a new teacher, coach, or other school staff member, it is important to educate that person about the disorder.
This discussion guide can help. Together, you and your child can use it to open the lines of communication at school. This conversation will help prevent any confusion about symptoms and help staff learn what to do in an emergency.
Typical symptoms of a bleeding disorder
- Excessive bleeding after a cut or scrape
- Easy bruising
When to call a doctor or go to the emergency room
- Heavy bleeding that can’t be stopped or a wound that keeps oozing blood
- Any signs of bleeding in the brain: painful headaches, neck stiffness, vomiting, sleepiness, difficulty walking, double vision, convulsions or seizures
- Limited motion, pain or swelling of any joint
Questions you might expect from school staff
Before any discussion with a school staff member, you may want to prepare answers to the following questions:
- Can you give me emergency contact information?
- What should I do if your child has a bleeding disorder emergency?
- What about minor bleeding? What type of first aid should be given?
- Are there any activities your child should not participate in?
- What kind of activities will require your child to wear protective equipment?
- What kind of protective equipment will your child need?
- How can I find more information about your child’s disorder?
This discussion guide can help you have informative discussions about your bleeding disorder with people at your workplace. It includes ways you can open the lines of communication at work, along with some questions you might expect from your employer and co-workers.
Preparing for discussions with co-workers
- Learn all you can about your condition. This will make you more prepared to answer questions and let co-workers know what to expect when you are experiencing a bleeding episode, or even if you have noticeable symptoms (eg, bleeding and bruises).
- Have books and other materials on hand for colleagues to reference when they ask for more information about your condition. You can also point them to Web sites, such as Hemophilia.org.
- Talk to your company’s human resources professional about your bleeding disorder, any special needs, and, most important, your employee rights.
- Inform colleagues to avoid misunderstandings and potentially dangerous situations based on lack of knowledge.
- Stay positive. People may feel more comfortable if they see that you are comfortable with the condition yourself.
Questions from your employer and co-workers
The following are common questions from people at work that you might want to be ready to answer:
- What is a bleeding disorder?
- What kind of bleeding disorder do you have?
- What are the signs and symptoms to watch for?
- How did you get a bleeding disorder?
- Is your bleeding disorder contagious?
- Is there a cure for your disorder?
- Is there anything I need to know so I can help you in an emergency?
- Will you be able to perform your job?
- Will you need any special arrangements at work?
- Will your bleeding disorder cause you to miss work?
- Do you have any questions about healthcare coverage?
- Where can I find more information about bleeding disorders?