Life with a Rare Disease: A Challenge for the Whole Family

Life with a rare disease can undoubtedly be challenging, starting with early diagnosis, which typically brings confusion and leads to a "new normal" at home. Rare diseases impact the entire family, from caregivers, parents, and siblings to the extended circle, and can dominate many future conversations. In learning to adapt, families face logistical, emotional, and socioeconomic difficulties with no clear end and must deal with pain, anxiety, and many unknowns.

Understanding the Role of Siblings of People with Rare Diseases

This project presented at the Orphan Drug Congress last April, supported by Alexion, AstraZeneca Rare Disease, aims to understand the role of siblings and discover what expectations this new generation has about rare diseases, to counter prejudices and create better support networks and systems. The study comprises information from 823 siblings of people with rare diseases divided into three age categories: 2-9, 10-20, and 21-34. The participants were from the United Kingdom and the United States, and the data was collected in 54 different cities and towns.

The Challenges of Growing Up with a Sibling with a Rare Disease

Siblings of people with rare diseases grow up with the challenges and burdens of seeing their sibling's daily efforts to maintain a normal life. A rare disease can affect everything from the sibling's personal focus on schoolwork to their mental state and outlook on life. Parents often underestimate the impact a rare disease can have on a sibling and can often push them into caregiving roles from an early age.

Recommendations to Support Siblings of People with Rare Diseases

1. Raising the Future: Ensure open and supportive education about rare diseases

Providing siblings with open and supportive education about rare diseases is crucial. This will help them better understand their sibling's condition and develop empathy and compassion.

2. It's About Them: Provide a safe space to express and share feelings

Siblings of people with rare diseases need a safe space where they can express and share their feelings about their experience. This can be through support groups, therapy, or simply having open and honest conversations with family and friends.

3. Better Support Systems: Implement support systems in schools and healthcare centers

It is important to implement support systems for siblings of people with rare diseases in schools and healthcare centers. This can include counseling, mentoring programs, and educational resources to help them navigate the unique challenges they face.

Key Findings from the Study

- 75% of siblings of people with rare diseases help with their sibling's care.

- 72% found that having a sibling with a rare condition negatively affected their school life.

- 50% of siblings of people with rare diseases consider themselves caregivers.

- 52% did not receive any kind of support.

Sources: #Alexion #AstraZeneca Rare Disease #Rare Revolution Magazine

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