What is enthesitis-related arthritis (ERA)?
Arthritis means “joint swelling” or “joint inflammation.” It is a disease that leads to pain, swelling, stiffness and loss of motion in the joints. There are many different types of arthritis. Enthesitis-related arthritis (ERA) is one type. Enthesitis is swelling or inflammation of the entheses, the connective tissue where tendons or ligaments attach to bone. Juvenile ERA is managed by rheumatologists, doctors who specialize in diseases of the joints and inflammation.
To learn more, please read Juvenile enthesitis-related arthritis (ERA) and Juvenile enthesitis-related arthritis: Treatment.
ERA can be stressful for the whole family
When your child is first diagnosed with ERA, it can be difficult for both your child and your family. Sometimes the disease seems to get better, and at other times it suddenly seems to get worse.
It is only natural that trying to juggle the responsibilities of caring for a child with ERA while caring for your other children, working, and maintaining a home can be overwhelming. It is very important that you ask for support whenever you feel you need it. Speak to your health care team, as they may be able to help you through these hard times and give you ideas of how to make things easier for your family.
ERA can also be stressful for siblings. They may feel neglected if their sibling with arthritis is getting more attention. They may feel guilty and anxious about their own health. Here are some ideas that may help make other siblings feel more at ease:
- Spend one-on-one time with your children.
- Remind your children that their sibling’s illness is not their fault.
- Tell your children that it is very unlikely that they will get ERA.
You may be able to get financial support
Many provinces offer financial support to families who are coping with large medical expenses. In Ontario, you may be eligible for one or more programs listed below. A social worker can help you find out what programs you can apply for.
Trillium Drug Program
The Trillium Drug Program offers drug coverage to families in Ontario who spend a large part of their income on medicines. Even if you have some drug coverage, you can still apply for Trillium coverage. For more information, visit the website.
Northern Ontario travel grants
Families living 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.
Try to maintain a routine
It is important to keep life as normal as possible for a child with ERA. Children can cope better with illness when they see it has not changed things too much in their life and their family’s life. For a child with ERA, doing the same things that they did before the diagnosis, whenever possible, can help them cope in a positive way. If you are unsure of what your child can do, ask a member of your health care team.
Daily routines are important to children. Routines can include school, chores, extracurricular activities at school and visits with friends. Maintaining the same routines will help your child feel better about how the disease has affected them. Social workers can give you advice on how to keep routines from changing too much. They can help you, your child, and your family set realistic goals.
ERA may affect your child’s activities
ERA may affect your child's usual activities. The pain and stiffness of joints or entheses may make normal tasks hard to do, like certain activities at school or in gym class. For example, during a flare children may find walking long distances and participating in certain sports more challenging. Children with ERA should be encouraged to take part in all activities inside and outside of school, and to stop if it hurts.
These are some suggestions from children who have experienced ERA:
- Morning stiffness is common in children with ERA. If stiffness in the morning is a big problem, wake up a bit earlier and take a hot shower for 10 to 15 minutes.
- Apply heating pads and hot water bottles to areas that are painful and stiff.
- Stretching in the morning, and as needed during the day, will help keep joints moving well.
ERA and exercise
It is very important for children with ERA to remain active. Symptoms of pain, stiffness, and fatigue get worse during longer periods of rest or inactivity and improve with activity.
Regular exercise for 20 to 30 minutes a day can help children with ERA in the following ways:
- Decrease pain and stiffness
- Keep muscles strong and flexible
- Help to better support the joints by strengthening muscles
- Improve energy
Good posture and back mobility exercises are important. A physiotherapist may give your child specific exercises to do or make suggestions about activities and sports. It is important for your child to stay active and choose activities that they like to do and can do regularly.
For more information, please read Exercises for enthesitis and arthritis.
ERA may affect your child at school
It is very important for your child with ERA to attend school on a regular basis. Going to school and interacting with peers are important parts of normal childhood development. Your child may miss school due to hospital visits and appointments or during a flare of their disease when there is more pain and swelling of joints and/or entheses.
For some children with ERA, it may be harder to take part in certain school activities. Prolonged sitting may make pain and stiffness worse. It may be harder for your child to get to school or climb stairs as pain and swelling may make walking difficult.
Talking to your child's school to explain their illness can make your child's school life easier. If needed, your child's doctor can send a letter to the school. The doctor can help explain how ERA may affect your child while at school. For example, the doctor may help to arrange access to an elevator, transportation, or an extra set of textbooks to use at home.
Children with ERA may have some trouble dealing with other children. They may feel different than other children. They may need help learning how to deal with these feelings and what to say to other children about their arthritis. If this is a problem, please speak with your health care team.
Follow-up care at the rheumatology clinic
Your child will be seen in the rheumatology clinic for follow-up care. Usually, a rheumatology clinic will have a team made up of doctors, nurses, and physical therapists who have a lot of experience treating children with ERA.
The members of the rheumatology team may include:
- A pediatric rheumatologist: This is a medical doctor that specializes in the diagnosis and treatment of children with a rheumatologic disease or illness. Rheumatologic diseases are diseases where there is inflammation in the body, like in arthritis.
- A nurse: This is usually your main contact person, who teaches you and your family about ERA and treatment. A nurse can provide ongoing support and answer any of your questions.
- A physical therapist and an occupational therapist: They will help your child keep their joint movement. They may teach your child exercises to keep the muscles strong to support the affected joints.
- A social worker and a child life specialist: They can help your child deal with emotional and behavioural problems that might result from the disease.
- A dietitian: They can help with your child's diet and nutrition.
Preparing for visits to the rheumatology clinic
Your child will need to visit the hospital between three and five times a year. How often your child comes for visits depends on how they are doing. Your doctor will let you know this. Your child may be at the hospital for up to two to four hours each time.
Your child may need a blood test during a clinic visit. This will help doctors check for inflammation in the blood and monitor for side effects from any medicine your child is taking. If your child needs to prepare for clinic visits in any other way, a member of the rheumatology team will tell you before the visit.
After you have met the rheumatology team, you will know more about how to care for your child and how to plan for future clinic visits.
ERA and vaccinations
Children who have ERA may not be able to receive certain vaccinations depending on the medication they are taking. Please check with your doctor to see which vaccines your child can receive.
Information and support
Arthritis Society: www.arthritis.ca
Canadian Spondylitis Association: www.spondylitis.ca
Printo: Information on paediatric rheumatic diseases by PRES, the Paediatric Rheumatology European Society: www.printo.it