Becoming a Proactive Caregiver

Sometimes, the greatest frustrations for EB patients and their families come from the inability to get questions answered due to the limited amount of information available about epidermolysis bullosa. Many people we’ve interviewed here, who have shared their own EB story at our blog, have echoed this sentiment.

As caregivers and loved ones, we must use every opportunity possible to seek out information and answers from those equipped to help us with wound care concerns or lifestyle challenges. Whether it’s the patient’s first appointment since being diagnosed or a periodically scheduled follow-up visit, a caregiver’s responsibility is to always show up prepared when meeting with specialists and provide as much detailed information as possible to enable physicians to suggest solutions. Here are some tips gathered from the Mayo Clinic and the Stanford School of Medicine, as well as our own experience, for doing your part.

  • Arrive with a list of questions for the doctor to make certain you get the opportunity to discuss your key concerns.
  • Complete any paperwork requested by the clinic or doctor’s office and have this information available upon arrival.
  • Bring along contact information for the patient’s primary care physician and general medical history.
  • When meeting with a physician, particularly a new specialist, have handy any other important medical information about the patient, such as allergies, medication list, vitamin regimen, and other diagnosed conditions.
  • If there are any new symptoms, conditions, or changes to the skin with blistering or irritation, relay this information to the specialist. Be sure to note when it occurred, duration, and any other details.
  • Bring along a personal supply of wound dressing materials for re-application at the end of the appointment.
  • If you anticipate the discussion will include an introduction to new treatment information or test results, ask a close friend or family member to join you to ensure you take away all pertinent new information.

What other proactive steps can you take as a caregiver when meeting up with doctors and specialists?


Preparing For Your Appointment, Mayo Clinic

Epidermolysis Bullosa Clinic Visits, Stanford School of Medicine-Dermatology

Related Posts:

Stress Management for Caregivers

Free EB Information Resources

Identify and Manage Caregiver Burnout

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
  • 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.


DebRA of America


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

Free EB Information Resources

Frequently in my role as a New Family Advocate with DebRA, I’m asked “Where…” Where can I find information, where can I find free supply samples or other resources, where can I find other families going through what we’re experiencing? It’s a common concern. No one wants to feel alone, especially when we’re faced with something unfamiliar, and let’s face it, somewhat complicated and certainly frightening as a parent, as a person living with EB or as a friend or loved one trying to show support.

These are just a few of the free resources I’ve come upon in my ongoing search for tools and information for EB families. (Please note: the first three links below are to posted PDF files not web pages, so don’t be alarmed when prompted about continuing to open the file.) I hope you find these useful and welcome suggestions for other resources worth checking out. Feel free to email me at with your own recommendations.

*The following suggested links are provided as a courtesy to the EB Resource community to help its members find references easily and is for informational purposes only. The links referenced are not intended to be a substitute for the advice of your 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 International
Stanford School of Medicine, Dermatology Department, Genetic Skin Center
National Institute of Arthritis and Musculoskeletal and Skin Diseases
DebRA of America
EB Friends

Related Posts:
Learning from Each Other, Part 1
Learning from Each Other, Part 2
The Everyday Challenges of New Parents