EB & Educating the Rest of the Family

When many of us first introduce the concept of epidermolysis bullosa to friends, neighbors and our extended family, they may not be certain how to accept this information or truly understand how this new unfamiliar abbreviation “EB” is going to impact the family. Sometimes uncomfortable, awkward conversations may be necessary to educate those around us so we may build a stronger, more complete and informed support network that our families will need. We offer a few ways to begin doing this.

  • Invite a good friend or family member to accompany you for a doctor’s appointment.
    Allow those closest to you to join you during a care consultation with the doctor or nurse to get a clearer picture of the challenges your family faces and help identify places in the care process where they may possibly offer assistance or resources.
  • Urge family supporters to tune in to other voices about EB.
    Suggest that close friends and family members connect with others on social media networks and blogs to learn about the disease, the latest research and events to benefit research and awareness efforts.
  • Accept assistance wherever offered and make suggestions when friends and family members express an interest to help.
    Open yourself to others’ lending their support in whatever ways they know how. Sometimes it can seem like a vulnerable situation but welcome others’ willingness to help out in the care process or other household tasks or obligations. Often you can guide these helpers to provide specific types of support that would be most practical to your family’s circumstances. Friends offering support are looking to you for guidance on how they can be the most helpful: don’t be afraid to be assertive enough to tell them or to accept their thoughtful offer.
  • Collaborate on a community fundraiser or awareness event.
    Encourage others in your inner circle to get involved with the cause to raise funds for EB research or direct EB patient support, or to join a campaign to draw attention to the subject. By being involved in an effort to educate others, your friends and family will want to learn all that they can to become a valuable resource who can share information with others.
  • Direct them to organizations with resources specifically designed to educate and support patients, families and their communities.
    Groups like DebRA of America, Pioneering Unique Cures for Kids (PUCK), United Survivors with EB, and Epidermolysis Bullosa Medical Research Foundation (EBMRF) serve various roles in the EB community and may offer different pieces of information or opportunities for loved ones to arm themselves with greater knowledge about the disease, current research efforts and patient services available. You also may want to point them to our recent list of 100 helpful links for EB families. It’s by no means a complete list of articles and resources available, but it can be a practical starting point to locate additional information.

For those who have already experienced this, what were some different strategies you used to educate close friends and families about EB and make them an invaluable part of your support network? We’d love to hear from other families.

Source:
Family Center, DebRA of America

Related Posts:
Doing Our Part: What Can You Share?
100 Links for EB Families
Support Networks vs. Support Groups

Making the Hunt for Good Info Easier

One of the most difficult aspects of supporting a loved one with epidermolysis bullosa and educating oneself is gathering information. For many of us, that first time we begin seeking answers to our questions, it can be a bit overwhelming and we may feel alone in the search. But rest assured: you’re not alone. Many of the EB patients and their families who make up our community have been there before, too, and as a result, it’s led to several of them launching their own websites to raise awareness and provide helpful links to information for others. These are just a few websites you may wish to check out to collect a broad scope of information and some unique ways the sites can assist individuals and families on their quest to locate resources about EB.

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

  • DebRA of America.
    Most likely, you’ve already visited the DebRA of America website, but have you fully explored it? There may be more stored here than you’ve discovered, including an online archive of the organization’s quarterly e-newsletters, an inspiring collection of EB patient and family stories and access to an EB video to share with teachers and classmates to help educate others.
  • NIAMS.
    The National Institute of Arthritis and Musculoskeletal and Skin Diseases website, part of the National Institutes of Health, Department of Health and Human Sciences, can be very helpful for gathering general clinical information. Its Q&A about Epidermolysis Bullosa provides key answers to questions about the symptoms, treatment and research being conducted with regard to EB.
  • EB Nurse.
    This site coordinated by National Rehab offers a variety of general care information about such topics as nutrition, wound care, pain assessment and newborn care. The site also offers its own monthly e-newsletter, The EB Advocate, which often shares info about recent fundraisers, programs or medical supply background information. Click here to check out the site’s most recently published e-newsletter.
  • EB Info World.
    This recently revamped site features a collection of personal stories, articles from a variety of sources on such topics as wrapping instructions and EB-friendly foods. In addition, it includes sections about the different types of EB citing both data and clinical photos credited to DebRA International.
  • EB Friends.
    The Epidermolysis Bullosa Friends website offers a direct connection to fellow site members who must be registered to interact with other members. The site’s most unique feature is an online forum in which members may pose questions and gather suggestions and feedback from other patients, caregivers or family members who may have shared similar questions or circumstances at one time and can now offer their own experience as a reference point.
  • United Survivors with Epidermolysis Bullosa.
    The nonprofit hosts EB Survivor Camps, unique specialized camps designed specifically for children and teens diagnosed with EB and run by adults living with EB. Parenting looking to learn more about any future camps and eligibility, or those who wish to volunteer or learn more about the organization’s plans to build scholarship and mentoring programs, can contact USeb at epidermolysisbullosa@gmail.com.
  • EB Clinic at Stanford School of Medicine.
    This site coordinated by Stanford’s School of Dermatology features both patient and physician resources, in addition to clinical background about the disease, FAQs, wound care videos, and the research trial information.

Sources:

DebRA of America

NIAMS

EB Nurse

EB Info World

EB Friends

United Survivors with Epidermolysis Bullosa

EB Clinic at Stanford School of Medicine

Related Posts:

Stress Management for Caregivers

Free EB Information Resources

Learning from Each Other, Part I

Learning from Each Other, Part II

EB Events This Summer

There are several fundraisers and EB-related events being held across the country this summer that offer opportunities to interact with others faced with EB and raise awareness about the skin disorder.

If you know of any other events taking place, let us know. Just send all of the details (date, time, location, cost to attend if it applies and info about the event itself) to Leslie.Rader@hollisterwoundcare.com and we’ll be sure to get the word out to the rest of the EB Resource community.

And if you do happen to attend any of the events we’ve listed and would like to share your thoughts in words or pictures, we’d love to hear from you. Thanks!

June 16-19

2010 Patient Care Conference (Cincinnati, OH)

DebRA hosts this free conference held every other year that enables patients, families and caregivers to hear from medical specialists and vendors about the latest clinical news and research findings and meet with each other to share information.

June 20-25

Camp Wonder (Livermore, CA)

Young patients (ages 7-16) living with painful skin diseases can take part in a fun, FREE week-long camp of outdoor activities like swimming, hiking, fishing and archery and indoor fun, too, including theater and arts and crafts, all sponsored by the Children’s Skin Disease Foundation.

August 1-7

EB Survivors Camp (Park City, UT)

United Survivors with EB (USeb) sponsors this summer camp offering great opportunities for young patients to interact and have fun. To apply for the camp, click here.

August 6

1st Annual Crossgates Golf Outing (Millersville, PA)

Dave Cornman hosts a new golf fundraiser at Crossgates Golf Course with all proceeds going to DebRA for its various programs and services.

August 8-13

Camp Dermadillo (Burton, TX)

Part of Camp Discovery for kids ages 9-15 and located between Houston and Austin in the rolling hills of Washington County, this is a unique camping and retreat facility designed to enrich the lives of people with special needs and is sponsored by the American Academy of Dermatology. And I’m happy to report that this summer I will get the opportunity to serve as a camp counselor there, too!

September 11

2nd Annual Butterfly Ball (Sonoma, CA)

This annual event benefits The Butterfly Fund and Miracles through Music to raise funds and awareness to improve the lives of people living with epidermolysis bullosa. The organizations are currently accepting donations and silent auction items for the event.