Welcome to ZEBRA, a program dedicated to mental health, emotional support, and comfort care. In our commitment to fostering well-being, we offer a range of services designed to guide you on your rare disease journey. From support groups to counseling sessions and workshops, ZEBRA recognizes the non-linear nature of mental health and grief. Join our community as we journey together towards healing, reducing stigma, understanding, comfort, and renewed strength.
You are not alone – ZEBRA is here to support you every step of the way. Sign up for ZEBRA Support today!
Self Care
Taking care of ourselves, first and foremost, is essential. We all tend to put others’ needs before our own but it is crucial to remember, that we, too, are a priority. Self-care is something that everyone can benefit from practicing on a daily basis. True self-care is not self-centered nor selfish; it is simply keeping yourself the focus of your own life. It’s about paying attention to how you feel in each moment, communicating clearly, and speaking up for yourself.
Managing Mental Health and Emotional Needs
Complete comfort care and end-of-life solutions includes help with managing mental and emotional distress. It is important to treat emotional pain and suffering. Encouraging conversations about your feelings might help. You might want to contact a counselor. You are not alone. If you experience severe depression, anxiety, or other mental health challenges, talk with your healthcare provider.
Comfort Care
Comfort care is an essential part of one’s end of life journey. The goals are to prevent or relieve suffering as much as possible and to improve quality of life while respecting the wishes of the dying person and their family. We believe there are four areas of importance when facing the death of a loved one, especially a child – physical comfort, mental and emotional needs, spiritual needs, and practical tasks. We are here to support you. Always remember to consult your healthcare team to make sure these suggestions are appropriate for your situation.
Spiritual Needs
Comfort care and end-of-life experiences often lead to spiritual needs being just as important as physical concerns. Many people find solace in their faith while others may struggle with the idea of faith or spiritual beliefs. Praying, talking with a pastor or minister, reading scriptural texts, or listening to positive and encouraging music may bring comfort. We are here to help.
ZEBRA Support Groups
Announcing Peer 2 Peer Online Support!
Online support groups have the potential to improve the access and delivery of support to a wide range of people, including some who would not seek face-to-face support at all. We understand a person’s relationship with a doctor or other medical personnel may not provide adequate emotional support, and a person’s family and friends may not understand the impact of a disease or treatment. Our online support groups create a space of support among people with shared experiences while bridging the gap between medical and emotional needs.
You may be nervous when you join a new support group. Participating gives you an opportunity to connect with people who are likely to understand how you may be feeling. You may want to listen at first. Over time, sharing your own ideas and experiences may help you get more out of the group. Whatever you choose, we’re here to support you.
Peer 2 Peer Support Groups are virtual and offers both privacy or anonymity. From time to time we may offer educational opportunities, such as a guest doctor, psychologist, nurse or social worker to talk about a topic related to the group’s needs. To protect your privacy, registration is required.
*A support group is not a substitute for regular medical care. Talk to your doctor about participating in a support group. If you think a support group is not a good fit for you, but you need help coping with your condition or situation, talk to your doctor about counseling or other types of therapy.
Source: U.S. Department of Health & Human Services, National Institute on Aging, https://www.nia.nih.gov | Support Groups, https://www.mayoclinic.org
The E.WE Foundation 