Tips for learning about your Vasculitis

As a teenager, there is a lot you can do to stay on top of your health with vasculitis. Although your health care team, family, friends, and other people with vasculitis can all support you in different ways; it is vital you learn some ways to manage. Here are some ways you can begin to manage your health.

• Do research to learn as much as you can about your type of vasculitis
• Ask questions at your doctor’s appointments. Ask about the vasculitis, your symptoms, and how will it affect your body etc.
• Talk with your doctor about anything you hear or read that you have questions about
• Join a teen or young adult support group. You may be able to find a support groups online or in person.

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What can I do to take charge of my health?

There is a lot you can do to learn how to manage vasculitis and take charge of your own health care. You may wish to consider starting with these steps:

• Work with your doctors and family to develop a treatment plan for managing your symptoms.
• Talk to your doctors and ask them any questions you have about your health
• If you are in the hospital, do not be afraid to tell the nurses and other hospital staff what you need. They are there to help make you as comfortable as possible.
• Use a journal or binder to keep track of your medicines and any side effects you notice, as well as other health information. You can download some sheets for your binder on our WORKSHEET page
• Pay attention to how you feel, and share what you notice with your doctors. For example, if you have bruises or other skin problems take picture to show your doctor. If you are experiencing pain, low energy, or poor appetite, it is important for your health care team to know how you are doing or how your body is responding to your treatment.
• Share any concerns you have about your treatment with your doctors
• Keep a calendar or app to record appointments and reminders
• Stay connected with your friends and family, and build a support system
• Stay informed about your type of vasculitis
• Manage your energy well. The spoon theory is a great way to manage your energy.
• Learn to advocate for yourself

You may need to make some changes in your life because of vasculitis. But with the help of your family and treatment team, you can learn to live with your symptoms — and keep doing many of the things you want and like to do.

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How can I develop healthy habits?

You may need to make some changes to your daily routine to manage your symptoms. Start by trying to develop these healthy habits:

• Take your medicines as prescribed
• Attend your appointments and follow instructions from your doctors/healthcare team
• Eat a healthy diet and be as physically active as you can
• Get enough rest — as fatigue can be an issue. Ensure you are getting quality and quantity of sleep.
• Take breaks during the day if possible to rest and recover
• Recognize when you need to take a break

Remember: One of the most important tools you have to manage vasculitis is your awareness of your body — your effort, your attention, and your insights This is helpful .

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Questions to Ask Your Health Care team

Asking your health care team questions is a good way to learn more about vasculitis, treatment and follow-up care. Doctors like to know what concerns you have and what may be confusing. Asking questions helps give you more control over your care and better ways to cope. Here are some tips to make talking with your doctor easier:

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Below are some sample questions you may want to consider asking. You may want to print this list and bring it to your next appointment.

Asking questions is an important part of managing your care. The questions you choose should be based on your needs and interests. It is also important that you recognize that those questions may change over time.

Consider the following questions as you decide what you want to ask your health care team:

1. What type of vasculitis do I have? Is it common in people my age?
2. Where can I learn more about this type of vasculitis?
3. What are my treatment options?
4. Are there research I can take part in? How do my family and I learn more about them?
5. How will vasculitis treatment affect how I feel or how I look?
6. What changes should I expect in my body because of the vasculitis or any treatment we decide? How can I cope with these changes?
7. Do I need to take time off school?
8. Are there any activities I should avoid?
9. Should I consider taking a medical leave from work?
10. When do I need follow-ups?

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Finding Support

1. Are there other people my age with this type of vasculitis that I can talk to?
2. If I need more support or information about coping with vasculitis who should I ask?
3. Where can I meet other people my age who have this vasculitis?
4. Do you know of support group for young adults or teens with vasculitis?