Support Networks vs. Support Groups

For some EB patients and their families, taking part in a support group or EB-specific community online, by phone or in person, may be second nature, but for others, the very idea of putting yourself out there—sharing your story, your struggles or insecurities—may be viewed as a frightening, stressful concept.

Every family is different, and sometimes I’ll work closely with some families who feel that facing EB on a daily basis as a patient, caregiver or family member is a private matter and not one that they choose to share with others around them. I respect their wishes and offer as many different resources as I can think of to provide some kind of assistance of a physical or financial nature. But I always encourage families to build a strong social support network and not dismiss the true power of interacting not only with those who understand firsthand the ongoing challenges that a life-threatening disease like EB can present, but also with those in your social circles (friends, co-workers and neighbors, for instance) who can provide a different level of support, guidance and understanding in their own unique way.

The Mayo Clinic notes that such a strong social support network can offset loneliness and stress, something that EB patients and their families who may experience feelings of isolation know all too well, and provide reinforcement and comfort in their time of need. I’ve had families tell me that they sometimes feel all alone because they are not able to do many of the same things that other families can do with ease, such as travel or play outdoors with their children as often as they’d like, because there are so many safety concerns and preparations that must take precedence and understandably so. But reaching out to your community and finding ways to be active even in small ways—like joining a walking group, visiting your community center regularly or making an appointment with yourself to go to the gym a few days a week—can provide a much-needed outlet for social interaction and a feeling of security.

Where a strong social network can offer a feeling of security and a sense of belonging, a support group may offer EB families an opportunity to truly make the direct connection with others who can identify with caregiving challenges they face on a day-to-day basis or emotional issues tied to the disease’s repercussions. For many, support groups can become a foundation to begin healing as they come to terms with this devastating disease that takes such a toll not only on the patient but also on the family members.

Have you looked into joining a support group or even forming one yourself? You can meet in person once a week or a few times per month. Have you investigated whether or not your local hospital may offer a support group that, while not EB-specific, may include other families who are coping with daily health challenges as your family does? Do you feel a support group may be right for you?

The benefits of a support group can be great, from helping a group’s members overcome their feelings of isolation to giving them a supportive environment where they can talk openly and freely about their challenges and even learn from each other. As the Mayo Clinic points out, a support group should never replace traditional medical care but it can be a helpful coping tool. While there are a variety of formats that a support group can take, the ultimate purpose is usually the same: to allow people with similar problems have a place to express themselves and offer practical advice and emotional support.

To learn more about EB support groups, you may want to visit DebRA’s support resources page for information about what groups are currently established across the country or even inquire inside the EB Friends forum. And don’t be afraid to reach out in the EB Resource Facebook community to ask others about other EB support resources that are available both as in-person and online networks.


Stress Management – Support Groups: Make Connections, Get Help, Mayo Clinic

Stress Management – Social Support: Tap This Tool to Combat Stress, Mayo Clinic

Support and Resources, DebRA of America

EB Friends

EB Resource, Facebook

Related Posts:

Join the EB Resource Conversation

The Importance of Connecting

What to Expect in Support Groups

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