Doing Our Part: What Can You Share?

*The following suggestions are provided as a courtesy to the EB Resource community for informational purposes only. The suggestions referenced are not intended to be a substitute for the advice of a medical care or mental health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your personal health care provider.

As people living with EB every day, whether as family members or patients ourselves, we often come into contact with others along the journey. Some can share similar experiences, and for others the subject of epidermolysis bullosa is new and confusing. How can we take our own EB experience and use it to offer support or knowledge to other EB families, especially those just beginning to gather information and resources to understand this new way of life?

  • Share supplies no longer used or those in excess. For parents who are not planning to add to their family and who may have originally purchased specific accessories or equipment to manage the care process for their baby with EB, find a family who might be able to use these items.
  • Volunteer to provide sitting support. Of course, this can only work in those instances where both families live in the same general vicinity but recall your own early weeks and months of caring for your baby. Wasn’t it challenging not having babysitting support, if only to allow time for an occasional quiet dinner with each other or a bike ride or run to recharge? Share the gift of support with someone in shoes you once wore and may still don.
  • Get involved in online group chats and forums. Joining communities such as EB Resource, EB Friends and others can provide a wonderful outlet to share information and answers to each other’s questions and provide support and insight as someone who has faced these same early EB challenges before.
  • Start a blog. This option may not be for everyone, but it doesn’t require you to be an ace reporter or best-selling novelist: simply someone willing to open up and share personal experiences, offer tips gained along the way and practical strategies learned by making mistakes and trying just about everything to help your loved ones. If by blogging about your own experiences, you can save another family from making the same mistakes or spending a lot of money to find the “right” tool that works, wouldn’t it be worth the time to share your story? Blogging can be a great way to connect with others and share thoughts on wound supplies, EB-friendly clothing brands and socializing strategies as families set out to interact more with others.
  • Reach out directly to new EB families. Once you learn of another new EB family in your community or perhaps a neighboring city or state, take the time and make that connection. Reach out to introduce yourself and offer to be there as a resource should they ever have a question about something that you may have experienced early on in the care process. While you can never and should not substitute for the guidance of a licensed medical professional, sometimes just having another person listen to you and offer support as a fellow parent and caregiver can be helpful.

When you first learned about EB, did anyone reach out directly to you to lend moral support or offer formal or informal educational resources about the disease? Think about your situation today: what can you do to support others?

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Social Media for EB Storytelling

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