CNS Vasculitis: Coping with Illness

Girl and mom hugging Girl and mom hugging

CNS vasculitis can be stressful for parents

Chronic disease comes with turmoil for you, your child, and your other children. Most parents are already very busy caring for children, maintaining the household, and usually working at their jobs. It is only natural that taking care of a sick child will make you feel overwhelmed. You may also be worried about money or strained relationships.

It is extremely important to ask for support wherever you can:

  • Friends and family can help by coming to appointments, doing household chores, caring for other children, or just buying you a cup of coffee.
  • Your employer can give you time off work for a stress leave. Social workers can help contact employers and arrange this time off.
  • Your family doctor can help you stay in good health. It may be tempting to overlook yourself to take care of your child, but if you get sick you will not be able to help at all. If you take care of your own body, your child will learn to do the same.
  • Social workers at the hospital can help you and your child deal with personal, family, or social problems that are related to your child's illness.

CNS vasculitis can be stressful for siblings

CNS vasculitis also has an impact on your other children and family members. Siblings often feel neglected, out of the loop, guilty, and anxious about their own health. To address these feelings, it may help to:

  • Spend one-on-one time with your children.
  • Remind your children that their brother or sister's disease is not their fault.
  • Tell your children that it is very unlikely that they will also get CNS vasculitis.

This awareness will help your family cope with the disruption to their regular life.

You may be able to get financial support

Many provinces and countries offer financial support to families who are coping with large medical expenses. In Ontario, you may be eligible for one or more of the programs listed here. A social worker can help you find out what programs you can apply for.

Trillium Drug Program

The Trillium Drug Program gives grants to families who spend a large part of their income on medicines. For more information, go to:

Assistance for Children with Severe Disabilities

Assistance for Children with Severe Disabilities (ACSD) gives grants to families who meet the following criteria:

  • The household income is under $62, 000 per year.
  • The sick child is under 18 years old.
  • The child's illness is disabling, meaning it affects the child's hearing, eating, walking, seeing, thinking, or control of body functions.

Northern Ontario travel grants

Families in Northern Ontario are eligible for travel grants. Your family doctor can give you more information on this program.

Tax deductions

All families are eligible for tax deductions for medical expenses. Keep all receipts related to your child's illness for when you fill out your income taxes.

You may wish to speak to other families

It might be helpful for you to get in touch with other families whose child has CNS vasculitis, or has recovered. Feel free to ask your doctor or social worker for contact information. Specify whether you would like to speak with families who are in the middle of the disease or families whose child has recovered. They offer different types of support.

Children can speak to other patients on Ability Online, a global Internet chat room.

Key points

  • Take care of yourself. Ask friends, work, and your family doctor for support. A social worker can also help you.
  • Your other children may feel neglected, guilty, or anxious. Try to spend time with them and remind them that their brother or sister's disease is not their fault.
  • You may be able to get financial support.
  • Ask your social worker or doctor if you would like to get in touch with another family whose child has had CNS vasculitis.

Susanne Benseler, MD

Holly Convery, RNEC, BScN