Posts belonging to Category 'Families'

A Look Back and a Look Ahead for EB Families


The new year will be upon us in just days. As we get ready to venture into 2018 uncertain of what the year may hold, we do know this: there are some exciting things ahead so let’s toast to the best of this year and what is yet to come.


In 2017, we saw a rise in the number of clinical trials in the U.S. and around the world focused on epidermolysis bullosa. As of December 2017, 20 trials are currently recruiting or launching though not yet recruiting, a strong indication that the research community dedicated to EB and other rare diseases is growing and becoming more vested in developing better treatments and a cure.


Various organizations that support EB patients and their families have continued their efforts to garner more media attention about the disease as well as research and resource dollars. Stories covered across major media outlets over the past year such as the Washington Post, New York Times, Forbes and Rolling Stone are reaching a wider audience and shedding light on a little-known disease. For The EB Research Partnership (EBRP), 2017 has meant record-setting fundraising dedicated to EB research including $1.3 million at its annual fall gala Action for Jackson and $135,000 at its annual poker night All in for a Cure, both held in NYC.


Groups also are making new strategic alliances to share valuable knowledge and data and encourage collaboration among clinical communities. Debra of America recently announced its new partnership with Jefferson Dermatology at Thomas Jefferson University (Philadelphia, PA) to establish the first ever Adult-only EB and Skin Cancer Clinic.


Next year, EB families can look forward to. Debra of America hosts its debra Care Conference July 22-25, 2018 at the Grand Sheraton at Wild Horse Pass in Chandler, Arizona. Held every two years, the event brings together EB patients and their families from across the country to meet with medical professionals, researchers and other resources to support EB families. As organizations like debra, EBRP, Epidermolysis Bullosa Medical Research Foundation (EBMRF) and the public figures that support them, garner greater media interest and fundraiser support for their campaigns and events, new resources and knowledge can become more readily available to EB patients and the people who care for them. It is very exciting to see what may be in store for all of us living and working within the EB community.


For now, we wish you all a beautiful holiday season, and will look forward to connecting again in the new year. Be safe out there, everyone.

Families on a Mission


Many families that I know divide up their responsibilities among members in the house. It may not be distributed evenly but each person usually has their role to play. For EB families, it is no different and that can mean not only house duties but care for the loved one diagnosed with EB and promoting EB awareness.


There are several ways that family members both immediate family as well as extended family can support the EB community within their own circles and during their daily interactions. It can be anything from hosting fundraisers or EB awareness events in their neighborhoods to finding unique ways to donate to organizations focused on supporting EB families and research. For example, those who frequently shop online can seek out nonprofit matching promotions such as Amazon’s Smile program which enables the user to choose what registered nonprofit on the site they want to benefit from their shopping dollars upon login. Other vendors including Gorjana Jewelry and NuSkin enable shoppers to purchase merchandise and see dollars donated directly to a specific EB organization.


Older siblings in an EB family can educate other children and teens through conversations or school awareness events about epidermolysis bullosa to help cultivate an informed and supportive environment. Extended family members such as aunts and uncles, grandparents or cousins may be able to lend a hand to support parent caregivers by providing backup care and opportunities for stress relief, something critical to any caregiver.


If you are part of an EB family, what role do you play? And consider this: is there something more you can do to support others outside of your family and within the EB community? Please comment here and share your own thoughts on the various roles people connected to or part of an EB family can play. We’d love to hear from you.

Building Your Own EB Team

When we find ourselves facing a challenge, it can feel so much easier to conquer when we surround ourselves with others to support and strengthen. As EB families, this is no different. Epidermolysis bullosa is a complex, devastating and painfully exhausting disease for everyone involved — from patient and caregiver to directly connected family and friends who are in the care circle.



We frequently blog about the different support resources available that can help us when we feel defeated or struggle with overcoming a specific obstacle. Anytime we reach outside of ourselves we work toward building a stronger more diversified set of skills and attributes in our network, or as I like to think of it, our own team.


Here in November – in the heart of college football and pro football seasons and having just finished watching two hard-working teams go at it in the World Series for the major league baseball championship – the concept of teams is familiar to most of us who have taken part in some type of team along the way. Maybe we had a key role on a sports team in school or a specific responsibility on a work team for a project. We know firsthand how critical one player can be to an entire team’s success. Without that person’s contribution, the team’s primary goal can be nearly insurmountable. But gather all of the right talents and place them in the appropriate roles and you have a formula for victory.


So who do you have on your EB team? I hope if your family has worked closely with debra throughout the initial gathering of information following diagnosis that you consider me as the organization’s New Family Advocate and debra’s EB Nurse Educator staff as part of your team. What about in your own family and community? Are there particular relatives or other moms in the neighborhood who you have come to rely on for empathy, advice and occasional babysitting support?


Consider any source of emotional support a key partner for you and your family, such as a family priest or spiritual advisor; a counselor or therapist; and any parental support groups. Of course, your collective medical team from your primary physician to any specialists with whom you have worked to address medical or dental issues that may arise, all of these valuable care professionals are a part of your EB family’s team.


As with any team, its success depends on communication. It is important for you to keep others abreast of any new changes – for example, if a new medication is being introduced (or eliminated), anyone who may engage with your family member with EB in a caregiver role needs to be aware of such changes. As you grow your EB family’s team over time, keep in mind that their success in helping you depends on how open you are to receiving their help but also keeping everyone on the same page when it comes to the latest information about you and your family.

Connecting with Your Child’s School about EB

*The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your healthcare professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.
Heading back to school can be difficult for parents and children everywhere. When there's also the challenge of an EB diagnosis, it requires some additional planning and preparation. Much of that has to do with educating professionals who may be around your child with EB for great lengths of time. We have assembled a few tips here to help you do that.

  • Send a standard wound care supply box and instructions with your child. In the event that an onsite school nurse needs to apply a new bandage to your child, or the child will be going offsite for a field trip, you may wish to provide the teacher with a clearly marked supply box indicating order of bandage application as well as related items like scissors, gloves and ointments.
  • Pack a bag of extra clothing to leave stored in the classroom. This might include slippers, additional socks and a change of clothes should your child experience any painful or draining wounds, or other skin trauma from outdoor play or other activities.
  • Provide important contact information beyond parents' numbers. Consider giving your teacher and school nurse EB-specific contact information including the website for DebRA of America ( and the email address for DebRA nurse educator, Geri Kelly-Mancuso RN ( For more information about her role, as well as phone numbers and hours of availability, click here.
  • Share DebRA's classroom video that defines epidermolysis bullosa for those unfamiliar with it. DebRA offers a practical look at EB via video segments designed specifically for teachers to share with their students as well as their colleagues. This is a free resource produced by The Children's Hospital of Colorado. The two-part DVD "What is EB and Your Welcoming Classroom" introduces what it means for a classmate diagnosed with EB, dismisses myths or confusion about the skin disorder, and reviews ways staff and classmates can support the student. For more information about obtaining a copy of this DVD, click here.
  • Before your child is set to arrive, schedule a meeting with the teacher and, if possible, the school nurse. Sometimes the most successful strategy to educate others is to simply offer the opportunity to sit down and discuss what is at hand. You can answer educators' questions and pose your own to get a sense of the protocol they must follow at their school. During such a conversation, you may also discover some gray areas yet to be worked out and discussed further.

EB-Friendly Holiday Shopping Tips

*The information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional in regards to your healthcare needs.


The holidays are often a time when co-workers, friends and family look to lavish loved ones with special tokens of their affection, presents to offer something fun, practical or meaningful. For EB families, however, there are important guidelines that gift-buyers should probably be aware of before purchasing a gift for your little one at the holidays or for a birthday. Consider this blog a useful link you can share with others to minimize any awkwardness but still pass along some important and timely information.

When asked for gift ideas for your child with EB, don’t be reluctant to share tips like these in order to ensure your child’s safety and comfort and look to your fellow members in the EB community for online vendors and stores in the marketplace that may carry EB-friendly brands, too. For those of us who live in the EB universe, some of these tips may seem like common sense but to someone who doesn’t experience day-to-day EB care, these can be invaluable pointers that they likely would not think of on their own.



  • When purchasing apparel for someone with EB, it’s best to avoid any scratchy snaps, buttons or fasteners, such as zippers or binding drawstrings, because these can irritate delicate skin.
  • As for fabrics, look for plush, soft materials, such as cotton, velvet and velour and avoid hard, textured or itchy fabrics like denim, corduroy or some wool pieces. An irritating fabric can lead to the person feeling compelled to scratch or rub their skin which may puncture fragile skin layers and create or prolong open wounds.
  • Also, be sure to purchase either loosely-fitting clothing (as long as it won’t brush and irritate skin when it moves) or apparel that is made to fit properly and not too tight, keeping in mind the added thickness that bandaging can contribute. Fabric that has to stretch across skin can also add too much pressure to sensitive areas which may already have blisters or other lacerations.



  • Depending on the age of the child, use caution when selecting toys with pointy or rough edges that could slip in delicate hands. Wherever possible, go with softer, vinyl or plush toys with smooth edges or cushioning.
  • Avoid games that encourage other contestants to touch, poke or press against other players, such as Twister.
  • Use caution when purchasing any cooking-related toys that might encourage kids to create or bake food items that can be ingested as these may or may not agree with your child’s digestion or throat if they suffer from painful swallowing, often experienced by those with EB.

A Season of Giving

This time of year brings people together as they travel across the country to meet up, enjoy a family meal and gather for religious holidays. During this time, we may be inundated with requests to give back and volunteer. I’ve always been impressed with how generous and giving members of the EB community are in supporting each other year-round. The holidays remind us that we are not alone and that others may be in need of a helping hand. And we’d love nothing more than to see members outside our EB community embrace this giving spirit all year to support the patients, the families and the caregivers that make up our community.


So if you have any friends or family who may be expressing an interest to get more involved in championing a good cause or especially, if they indicate a desire to support one of your favorite EB-focused organizations, remind them of these various ways their family (and yours) can continue to help the EB community not just during this festive, giving season but throughout the entire year.


  • Host a neighborhood or city-wide fundraiser or pitch in to assist with one.
  • Volunteer to support a favorite EB organization and reach out to that group to find out specifically where there are unmet needs.
  • Develop EB awareness campaigns and contact local media and area civic groups to seek opportunities to promote these campaigns.
  • Use social media accounts to feature links to EB-related headlines and important information to educate friends and colleagues.
  • Talk with local businesses about being part of an effort to raise awareness and funds through their donation of a small portion of their profit proceeds on a given date in exchange for publicity.
  • Provide a local EB family direct support in the form of fundraising dollars raised.
  • Learn basic wound care duties and offer an EB family close to them backup caregiver duty for parents to run errands or enjoy some brief personal downtime when needed.



Looking Ahead

It can be difficult to stay positive as a caregiver or head of a family coping with the diagnosis of a rare medical condition like EB. There are many unknowns, variables that cannot be fully understood and a timeline that may not be able to offer you a lot of concrete answers or comfort due to its unpredictability. Sometimes the key to moving forward and staying positive is making a conscious effort to do so by looking ahead and focusing on positive things that lay ahead in the future and what you know rather than dwelling on what you don’t

Joe Wilner writes in his piece on PsychCentral® “How to Stay Hopeful and Resilient through Adversity” that it is important to focus on the good occurring in your life during these tough times and being grateful and appreciative for what you’ve received from any experience. When others reach out to us and show their support during a call of distress we may have sent out to others, we have an opportunity to embrace our gratitude and focus on their response rather than what may have led us to ask for help in the first place. Wilner also points out that living with purpose and intention can also continue to guide us to persevere even when things may look to be heading in a direction that is either bleak or uncertain.

In another article “Stay Positive in the Midst of Adversity,” writer Mike Robbins notes that sometimes it is the unpredictability of the future that can deliver a ‘doom and gloom’ mentality that can bring us down further. He maintains that by doing three things – being honest, being conscious and being grateful, we can rise above what we’re facing, that which we understand and that which we may not.

So when you look ahead, what do you see that you can be sure of? Perhaps there is an upcoming school event or extracurricular function for work that your family can attend or maybe you're planning a special fundraiser or awareness event during EB Awareness week in late October or sometime earlier that month. Focus your energy and positive feelings on what you know and, in this last example, on all that your event can potentially do to help out families like yours in the future. You may also have some special holiday traditions around Halloween, Thanksgiving or Christmas. Get the entire family charged up and looking forward to those fun activities just around the corner and channel any negative energy from doubt or fear into positive thoughts about your future plans. By getting the whole family on board and committed to focusing on what’s positive, you can provide daily care processes without letting them and an uncertain prognosis dominate your life or thoughts and you can concentrate on enjoying life as a family.

** Please note that the suggestions offered above are for informational purposes only and are not the opinion of EB Resource. Individuals should always consult their physician regarding any skin or wound care program or other care regimens.

EB and the New School Year

With a new school year just weeks around the corner for some, we thought it would be a good time to compile some back-to-school pointers for our families in the community as well as pull together past blog links that offer advice for educating others unfamiliar with EB.

For the youngest students, that first day of class can be both intimidating and exciting, but they take on added stress not knowing how others will react when they learn about a student with EB and the challenges he/she faces.

Staff writers at Junior magazine put together this helpful list of back-to-school tips that can be useful to all families but particularly for those whose children may feel a little reluctant or frightened to leave the safety of mom or dad’s side. “First-day nerves: Back-to-school advice for your child

Katherine Lee also offers suggestions for ways to make the often daunting experience far less nerve-wracking with her article “Tips to Ease Back to School Anxiety.

St. Christopher’s Hospital for Children lists some tips for families who are specifically concerned about how to coordinate their child’s school attendance while taking into consideration chronic health conditions in a school environment in Dr. Renee Turchi’s piece “Managing Chronic Health Conditions at School.

Here on the EB Resource blog we have also offered some advice in the past that was specific to EB parents looking for ways to connect with teachers and other school personnel, their child’s classmates and families. So you may wish to review some of these past blogs for other tips for helping your child adjust to the classroom environment and for explaining to others about EB to support everyone’s comfort and understanding of the topic.

Do any parents out there have their own suggestions they’d like to add? We certainly welcome your feedback. Feel free to leave a comment here on the blog or on our Facebook page. And thanks, as always, for reading and for joining in on the conversation!

Families Helping Families

What has always struck me about the EB community is how generous and thoughtful its members are with each other, even in the face of personal loss. I have witnessed on many occasions families who’ve watched a diagnosis of epidermolysis bullosa result in the loss of a child, turn to help another family in need as they are first learning about EB and trying to gather what it will mean short-term and long-term for their family.

It’s difficult to describe what our community is like to others who have not been directly impacted by a rare disease like EB. Community is truly the best word to use to articulate the connection between members, whether they face EB head-on daily or may have cared for a loved one diagnosed with it, years earlier. There is a special environment among the parents and the children, one of understanding and a unity of sorts. It’s not one that excludes others who wish to show compassion or support but more of an emotional bond that brings together these families sharing a unique experience and one that can be less overwhelming, when armed with the knowledge that they are not alone.

As families, we can support one another in fundamental ways and it may escape us, going about our busy lives, all that we can do to make a difference. For example, people can offer wound care suggestions to families recently diagnosed with EB that may be still trying to determine what their daily care regimen is going to look like.

With the rise in popularity of social media, we can use tools like Facebook, Twitter and Google Plus to reach out regularly and show support, whether it’s just checking in with a parent to see if they have any questions or issues that a more experienced EB caregiver may have faced already, or even setting up a weekly phone call or online chat to serve as a channel for support.

Then, of course, there are indirect ways we can help one another: Following each other’s blogs and sharing them with our own online friends to educate others about EB or continuing to hold supply drives or fundraisers to support other EB families, even if we may not be directly impacted by EB.

I have commented before that an EB parent will always be an EB parent. We must find new ways every day to be there for each other, and look out for one another, too, for ways to provide a greater scope and depth of clinical information where missing, material supplies where deficient and emotional support where needed. That is what the definition of community is all about.

Redefining Independence


Sometimes the word “independence” can be misinterpreted. For example, with EB families, so much of what’s done to ensure the safe, reliable and consistent care of a child or other loved one diagnosed with EB is hinged upon the collaboration and dependence on multiple people who contribute to different steps within the care process.


But that doesn’t make those families any less independent. They are still essentially planning for the care of their child and using whatever means possible to offer their son or daughter the most comfortable and fulfilling life, even when it may feel sometimes as if they are operating all alone.


It can be difficult to reach out for help. We can become so used to creatively managing on our own to come up with solutions when we can’t locate them elsewhere. This often leads us to count on only a handful of key people who fully comprehend the magnitude of the impact epidermolysis bullosa can have on an individual and a family.


As someone who has filled those shoes and will always consider herself an EB parent, I can confirm that you want so much as a parent to be able to stand on your own and care for your child. You want to show your loved ones and anyone who may not have faith in you and your child’s livelihood that you are strong, determined and taking matters into your own hands while facing what can appear to be an uncertain future.


However, very so often there comes a time when a particular resource or helping hand becomes necessary to grasp and it is imperative for any parent to recognize how critical incorporating a system of collaborations and shared efforts can be for the health and well-being of his/her child. And no, it does not take away from your role as primary caregiver and decision-maker for your child, but it capitalizes on the very best resources that are available – whether it’s knowledge, supplies or support of some other kind.


So though it may appear to be an oxymoron, you can remain independent in determining your plan for living with EB and managing its impact on your household while still depending on others and embracing their experience and support offered to you locally or from afar. It doesn’t make you any less independent as a mom or dad. It simply gives you more tools to be the best mom or dad possible.