The Impact of Rare Disease on Siblings

A rare disease diagnosis affects the entire family. When a rare disease touches a child, parents become caregivers. Taking care of the child and maintaining their health may become all-consuming. Uncertainty about the future of the child may loom over the family.^1,2

While it is never the intention of the parents, the needs of healthy siblings often take a backseat to the needs of the child with a rare disease. This can have a profound impact on the healthy children of the family.^1,2

Creating a close-knit family

A child with a rare disease can bring a family closer. Family members often rally around the child. Everyone may feel a sense of protection. Members of the family may come together to keep the household running.¹

All these factors lead to family members leaning and depending on each other. These strong family bonds may benefit the siblings of children with a rare disease.¹

Unfortunately, hospitalizations may take the child and one or both parents away for long periods. Siblings also may have to give up their social lives as caring for the child and home becomes the focus.¹

Building empathy skills

The presence of rare disease can increase a sibling’s capacity for empathy. Through hardship, the siblings may learn sensitivity and compassion. They may become patient and easy-going, adapting to the urgent needs of the child with a rare disease.^1,2

Siblings often show a willingness to help however they can. They take on additional responsibilities at home to ease the burden on parents. Siblings may take charge of cleaning, cooking, and caring for younger siblings.^1,2

Mental health effects on siblings

Growing up with a brother or sister with a rare disease can put healthy siblings at risk for mental health problems. These children may feel neglected by their parents. Feeling like they are outside the primary circle of care can create stress.^1,2

They may have symptoms of:^1,2

• Depression
• Anxiety
• Post-traumatic stress
• Aggression
• Withdrawal
• Loneliness

Parents may not be able to meet the emotional needs of healthy siblings. The impact of this can follow the children into adulthood.^1,2

Impact on school performance and friends

Many children who have a sibling with a rare disease struggle in school. Worry for their sibling can affect their concentration and performance. They may want to be at home instead of in school. They may forgo after-school activities out of desire or necessity.¹

Having less time to engage with friends outside of school can lead to feelings of isolation and loneliness. If children are needed at home, they may not be able to visit their friends' houses. Even hosting friends at their house can feel uncomfortable and add stress.¹

Possible physical symptoms

The stress of a family member living with a rare disease can take a physical toll on children. Symptoms of stress often show up in eating and sleeping habits. Siblings may experience:¹

• Weight loss
• Over- or under-eating
• Nightmares
• Exhaustion
• Headaches
• Bed-wetting

Working with too little information

Children often do not understand the rare disease their sibling lives with. While parents may become consumed with learning about the disease, they may forget that the children feel as lost as they do. Siblings may feel there is no time or support to ask questions.^1,2

Siblings also may be afraid that they can contract the disease from their brother or sister. Concern for their own health may create anxiety. Parents may not communicate well about the prognosis of the child with a rare disease. Siblings, then, may even worry about their brother or sister dying.^1,2

Assessing overall quality of life

There can be both positive and negative effects on quality of life for healthy siblings. The positive effects may not appear until later in life. The negative effects may emerge quickly after their sibling is diagnosed with a rare disease.^1,2

Healthy siblings can benefit from support groups and learning as much as possible about the disease. Creating channels of open communication helps healthy siblings feel seen and may reduce their anxiety. Spending dedicated time in which the disease is not the focus helps healthy siblings feel secure about their place in the family.^1,2