Support groups for children with Lupus and their families

Support groups can be really helpful for children with lupus and their families. These groups provide a space to share experiences, learn from others, and feel less alone. For children with lupus, support groups can also help them connect with others who understand what they're going through, while also providing emotional support and coping strategies. Here are some options for support groups and resources:

1. Lupus Foundation of America (LFA)

• The Lupus Foundation of America offers a variety of resources for both adults and children with lupus, including support groups and online communities. They often have local chapters where families can connect with others.

• Website: www.lupus.org

• LFA has Children and Teens info here.

• LFA also offers LupusConnect, an online community where patients and caregivers can connect.

2. Lupus Support Groups on Facebook

• Facebook has many private support groups for people with lupus, including those specifically for children or families of children with lupus. These groups allow parents and children to share experiences, ask questions, and offer support to each other.

• You can search for groups like "Lupus in Children" or "Pediatric Lupus Support" on Facebook to find active communities.

3. The American College of Rheumatology (ACR)

• ACR offers information about pediatric lupus and can direct families to support resources and specialists.

• Website: www.rheumatology.org

4. Children’s Hospitals and Pediatric Rheumatology Centers

• Many children's hospitals or clinics that specialize in rheumatology will offer support groups or can direct families to local support options. For example, hospitals like Boston Children’s Hospital and Children’s Hospital of Philadelphia often have lupus-specific programs or support groups for young patients and their families.

5. Lupus UK

• Although based in the UK, Lupus UK provides online support and resources for people with lupus worldwide, including for children and their families. They often have online forums and other virtual support options.

• Website: www.lupusuk.org.uk

6. Online Forums and Communities

• Websites like PatientsLikeMe and HealthUnlocked have communities where people living with lupus can connect, share experiences, and offer advice. Some forums are specifically for younger people or parents of kids with lupus.

7. Support from Rheumatologists and Social Workers

• Many pediatric rheumatologists and social workers can help connect families with local support groups or peer mentors who have experience with pediatric lupus. It's always a good idea to ask your child's doctor about available local or virtual support options.

Benefits of Support Groups:

• Emotional support: Connecting with others who truly understand the challenges of living with lupus can provide comfort.

• Practical advice: Parents and children can share tips on managing symptoms, navigating school, or handling treatment.

• Peer connections: Children can build friendships with others who are going through similar experiences.

• Awareness and advocacy: Support groups can help families stay informed about new treatments, research, and advocacy opportunities for lupus.

Finding the right support group can make a big difference in coping with the emotional and practical challenges of lupus. If you're unsure where to start, talk to your child's doctor—they may have additional recommendations or connections to local groups.