Patient & Family Support

Learn information about autoimmune hepatitis that is valuable for the pediatric patient, caregivers, and their supportive family members.

The AIHA Mentorship Program

The Autoimmune Hepatitis Association is excited to announce a new support program! The AIHA Mentorship Program connects patients with other patients and caregivers with other caregivers in order to provide one-on-one support. The program, open to all patients ages 5+ and caregivers, is a way for participants to share experiences, learn from one another, and provide emotional support.

The program is tailored to the preferences of participants. Mentors and mentees can communicate however they like. They may choose to text, email, talk on the phone, and/or have video calls with one another. Children may write pen pal letters or share drawings.

Whether mentors and mentees choose to share their stories and experiences or simply vent about their day, they can feel confident they are not alone in their AIH journey.

 

Parent and Caregiver Support Group

Our connection with A-LiNK (Autoimmune Liver Disease Network for Kids) helps connect parents and caregivers through a support group. The meetings are for caregivers with children college-aged or younger who have been diagnosed with an autoimmune liver disease. The group meets the first Tuesday of every month at 5:30 EST by Zoom. Send us an email at info@aihep.org to join.

New Patient Support Group

The AIHA has a support group for newly diagnosed patients that meets quarterly. Send us an email at info@aihep.org to join. This group, which is open to patients who have been diagnosed within the past year and their family members, provides basic disease education and support. AIHA Executive Director Craig Lammert, M.D., who is a hepatologist, typically attends these meetings to answer general questions about AIH.

Other Support Groups

Support groups provide a much-needed place for people with autoimmune hepatitis to connect and find support. At support group meetings, patients learn and gather strength from one other and occasionally hear from experts. Each support group participant has the opportunity to share their journey with the disease, ask questions, and support other patients. In addition to the caregiver and newly diagnosed groups, we offer the following support groups:

  • Midwest
  • Northeast
  • Southeast
  • West Coast
  • Male patients
  • Young adults

Please email us if you’d like to attend an upcoming meeting.

Coping Strategies For Parents

Having a chronic illness in the family can put strain on the whole family, especially the parents and caregivers. Elaine Gilbert, a pediatric psychologist at IU Riley Hospital, discusses strategies for parents and children to cope with the challenges of having a chronic disease. She shares information on how to deal with different types of stress.

Sibling Support

Siblings and close family members can feel the weight of the disease too. They may worry, feel neglected, have guilt for being “healthy,” and develop generalized anxiety from the unknown. It is important to establish some balance among the children, listen to their concerns and questions, and be honest and communicate with them. Elizabeth Christofferson, Ph.D., from the University of Colorado, shares coping strategies for children with chronic illness and siblings.

Tools to Share Information about AIH

Sharing information about autoimmune hepatitis with family and friends can be overwhelming. We can help. Personalize the letter we’ve prepared and then email, mail, or hand-deliver it to the recipient of your choice.

Children need a voice in their journey with autoimmune hepatitis. Help them be heard with this letter template. Print it out, and help them fill in the blanks to personalize it. Email, mail, or hand-deliver it to the recipient of your choice.