Posts belonging to Category 'Support'

Ways to Support EB Families

Whether you are living with EB every day or know someone who is, there are things we can do to support not only those in our lives impacted by the disease but others and their families, as well.

  • Share, share, share. If you’re on various social media platforms, whether it’s Twitter, Facebook, LinkedIn, Google+ – any of them! – you have an invaluable opportunity to tell people about something they probably aren’t familiar with. Use your reach to educate and seek potential supporters for EB- fundraisers or campaigns.
  • Reach out to your friends facing EB or to organizations. If you want to help do something, the quickest way to get there is to ask. Go directly to the source and find out where there is the most need, and how you might lend a hand.
  • Lend your talents. Perhaps you have a particular skill or resource that could make a difference to a specific family, group of families or even an EB-focused organization. Put out your message to those parties for whom you might be of service and if you’re truly committed to making a difference, consider offering them pro bono or discounted.
  • Rally for fundraisers. Even if a fundraiser is across the country or heck, across the world, there is nothing stopping you from leading a grassroots effort of your own to support that fundraiser. Create your own arm of support in your community and raise funds and awareness for an EB charity you follow. Or still yet, reach out to those fundraiser organizers directly and ask them if there are other needs that they have for their event such as food, drinks or professional services of some kind and offer to provide resources to help them with that specific need.

There are so many ways all of us can support the EB community, even when we are not directly affected. If we maximize our resources to do it, whether we are using our channels of influence to their fullest or directly promoting efforts to grow research dollars or family support, we can do so much collectively. So we encourage you to find you own unique niche for making a difference.

What Does Support Mean to You?


We just had a busy couple of weeks in the EB community, busy couple of months for some of those planning large-scale EB fundraisers and awareness events, like our friends at Jackson Gabriel Silver Foundation and DebRA of America. But in the end, why many of us do what we do is ultimately to uncover new ways or strategies to allow us to better support those diagnosed with EB, their families and their caregivers, often one and the same.


But support comes in many forms and can mean so many different things to people. For some families, it might mean opportunities for discounted supplies or even free resources to make the caregiving process operate more smoothly or comfortably for the patient and for the family incurring the costly bills of wound care which can truly cripple a family’s savings. For other families, what may be most helpful of all is simply having easy access to a medical expert, such as a knowledgeable, licensed and registered nurse, to ask questions or seek guidance as caregiving dilemmas arise. Others may view support as a kind voice offering words of advice, such as from a fellow parent who understands the emotions being experienced or from bloggers sharing their own stories so others can identify with them.


For your own situation, where do you feel you have the greatest need for support, if at all? Each family is different and may be able to help another in one area while needing some assistance or guidance in another. That is what makes the different online communities so unique. You can experience one kind of synergy and group dynamic on Twitter and then discover a totally different set of people and input from your Facebook community.


We encourage you to reach out to as many different people across social media platforms and organizations to find the right support for you and your loved ones. There are so many wonderful people going through similar circumstances as they learn to integrate life with epidermolysis bullosa into their world, and it’s so much more helpful when we can reach out to others who have been there before or may be there with us right now and can offer us some consolation, empathy and valuable knowledge.

Value of Support Groups

*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.

For many, the concept of a support group may be familiar, but their function or way of operating may be completely foreign to us. More than likely, we’ve heard of support groups, but it’s quite possible we’ve never actually taken part in one before. What could we take away from such an experience?

According to Mary Kugler, R.N. in her article “Why Join a Rare Disease Support Group?” there are many useful reasons to participate in a support group, particularly for those living in a household faced with a rare disease. People may be drawn to take part for alleviating feelings of isolation, for coping with others’ confusion about the condition and for finding ways to better adjust to the diagnosis or living with the disease.

Whatever reason may draw you to a support group initially, it’s critical that you have realistic expectations before stepping foot inside the door. Mary Carol Randall, MA, lays out the basic premise of what you can expect in a traditional support group in her piece “Support Groups: What They Are and What They Do.” She suggests that before selecting a support group a person should weigh several factors beyond their reasons for attending, including who the support group is for (the patient, the caregiver or a loved one), what emotional dynamics they are seeking in a group, how open they are willing to be in discussing their feelings, and who they want running it – a professional counselor or peers.

The website offers a variety of rare disease support groups online to alleviate the issue of transportation which can sometimes pose a problem in getting to a support group regularly. The National Organization for Rare Disorders, Inc. (NORD) also provides online patient communities, patient stories and opportunities for face-to-face meetings with other patients facing rare diseases or disorders. While these connections may not necessarily link one to others touched by EB, families may still find it helpful to connect with other families who understand the challenges faced by being diagnosed with a rare disease like epidermolysis bullosa.

The key to any support group’s success lies in the willingness and commitment of its members to be open and exchange information with each other. Barbara Sorensen points out in her piece “Why Do Support Groups Work?” that as these groups can be a valuable place for people to share practical information, they can also be an important resource to dispel myths and uncover misinformation that may have been conveyed somewhere along the way in their journey.

If you decide to join a support group, be sure to do your homework beforehand. And ask around in the EB Resource community about others’ experiences, whether on the Facebook page or on Twitter.

Support groups can be a valuable tool but only if you have realistic expectations and are prepared for your role in helping to make them work. Keep in touch if you decide to participate in one and let us know how it goes! We love hearing from you.

EB from a Global Perspective

To people just becoming educated about epidermolysis bullosa, it may come as a surprise to see how far-reaching efforts are to raise awareness and research dollars to find a cure (long-term) and better treatments (short-term) for those diagnosed with EB. For example, did you know that there are several dozen different national DebRA groups across the world…from nearby Mexico, Canada and here in the U.S. to across Europe and its various organizations and as far reaching as China, Malaysia, Russia and Japan?
The global network known as DebRA International serves as a centralized hub online for people to gather information about the 48 different national groups as well as their website addresses and contact information. We’re constantly trying to stay abreast of EB headlines across the world and are frequently impressed with what we hear taking place not just here with DebRA of America, but in other countries, too. For instance, DEBRA Ireland has done quite a bit to engage its various communities with unique events and opportunities to educate. Recently, they hosted a family day and their current online calendar reflects a diverse mix of fun and memorable ways to connect including a motorbike run, a dance marathon, building event and even a coast to coast, multi-sport challenge which is sure to garner a lot of media attention and participation nationwide.
Throughout the year, DebRA International is also instrumental in the coordination of conferences across the world to bring together scientists, activists and others deeply involved in the cause for discussions about gathering funds and conducting clinical research, including one just held in late May in Lisbon. In September, a second annual EB conference will be held in Salzburg and later that same month, DebRA’s International Annual Congress in Rome. These are wonderful opportunities for people to share valuable information, insight and avenues to collaborate or pool resources globally where it makes sense.
In this country, we still have work to do across the various EB-focused organizations to raise EB awareness and research dollars, not solely DebRA of America but the other very active groups such as EBMRF and Jackson Gabriel Silver Foundation, among others, as well. It is comforting to know that we are not on this mission alone and that every time there is a small victory for any one of our various groups championing the cause for individuals and families impacted by EB across the world, it is in fact a huge victory for all of us.

Supporting EB Moms This Mother’s Day

Mother’s Day is just around the corner. This is often a time when children and spouses pull out all the stops to show they care. For moms of children with EB, being a mom carries a whole different set of challenges and stresses.

We thought this would be a great opportunity to offer some supportive suggestions to those who may know an EB mom personally and want to remember them at the holiday. Remembering her with a present is nice but helping her find a way to use the gift and enjoy it may take some extra effort on your part. Remove any guilt she may feel for allocating time to herself by making your present stress-free. Here are some gift ideas that may offer a small lift of spirits and demonstrate you care.

  • Offer A Fresh Idea. Consider fresh-baked goods, a fresh fruit arrangement or fresh flowers. All moms (and some dads, too) can find themselves running around as they manage multiple lives’ daily routines, but it can be a wonderful pick-me-up to receive a reminder from a good friend or co-worker to stop for a moment and savor something new, fresh and handpicked.
  • Encourage Downtime. Everyone knows that devoted moms tend to forget to take a little time for themselves. It’s not always easy to carve out personal time, but perhaps a reminder like a gift card for downloadable music for her mp3 player or downloadable books for an e-reader is a thoughtful way to say ‘it’s okay for you to steal away for a few moments, too.'
  • Lend a Hand. One thing that can be difficult for EB moms is finding a window of opportunity to step away from the house and run errands. Offer to fill in at a set time on the same day weekly for a month (or more) as a gift that truly keeps on giving.
  • Rejuvenate. The idea of a day of pampering whether it’s a much needed replenishing of one’s mind and body at a spa or a simple afternoon getting a manicure may sound attractive to a hard-working mother. To an EB mom, it may be just what she needs in that stressful moment to catch herself from overworking herself so hard she jeopardizes her own health, restfulness and clarity.
  • Whisk Away. What better way to step away for a few moments than a night out for dinner and a movie with a good friend or a special afternoon shopping, taking in a local attraction or simply lounging by the community clubhouse pool with a friend and a good book. Chat with a spouse or family member about relieving mom of her responsibilities for a short period of time and snag her for a little fun time away from home to catch up and unwind.

Sweet Thoughts on Support

Valentine's Day is approaching. Why not take time to thank those who sweeten your life?



This is a week that celebrates sweethearts, love and devotion – it’s Valentine’s week, after all – but we say spread a little love this week to your support network.


It is difficult for others to truly understand the stress of being a 24-hour caregiver to your own child or seeing your son or daughter suffer through the pain of a bandage change or other discomfort that accompanies epidermolysis bullosa. But as EB families, we each come to rely on members of our support team that help us in so many other ways. Whether they just make an effort to share their empathy or encourage us to keep going, sometimes they can be the difference in us taking next steps, even when we may feel as if we’ve run out of steam.


So why not use this week to extend a special thanks? Reach out to your own support network and show your appreciation for the unique way they lend a hand.


Maybe a family member or friend has been helpful taking on some caregiving duties on certain days to give you a little time to run errands or go to the gym. You may have an employer or co-worker who has stepped in to cover during doctor’s appointments or enabled you to perform job duties from home. Or perhaps a fellow mom has opened her home after school to your child and her classmates and worked closely with you to ensure a positive, safe play environment. Each thoughtful action enables your family to facilitate the daily care process for EB a little bit more smoothly.


Consider finding small ways to express your appreciation this week –a gift card to a favorite restaurant, movie theaters or shop; a book or CD you think they’ll like; a baked good or homemade dish or dessert they can enjoy alone or with their own loved ones; or even just a special card to say thanks.


Sometimes the people who can be the most helpful in carrying out a single thoughtful gesture underestimate just how much they are helping us. This is a wonderful time to let them know that whatever they’ve done to support you and your family as you care for your child – it hasn’t gone unnoticed.

EB Resource Resolutions

What To Expect From Us in 2013.



Happy New Year, everybody!


Each year, we set out to make EB Resource a more valuable resource for our community’s members, and 2013 is no exception.


We have already made it our mission to feature more voices on the blog and even include several guest blogs throughout the year from some of the people who are featured here in interviews. So look for that in the months ahead.


We will be asking more thought-provoking questions of members in EB Resource's Facebook and Twitter communities to generate greater dialogue among members, and we invite all of them to do the same. This is your forum as much as it is ours to provide the latest news and information but also to support one another. Often, that means seeking feedback from other families going through similar situations. We want you to feel completely at home to ask other members their recommendations for anything, whether it is EB-friendly footwear brands, fundraiser tips or strategies for school-related issues.


We also plan to promote more regularly upcoming EB events and fundraisers as well as any industry or medical community events related to its study or research. However, this is one area where we need your help! Many times, we get the news about an event’s existence too late after a blog has posted, and we cannot spread the word as much as we would have liked. If you know of any upcoming events, are planning your own or will be attending one, send us the details by email as soon as you have them ( or tell us about it at Facebook or Twitter so we may include it within our next quarterly blog about future events. The way to success for any of these awareness or fundraising campaigns is through word of mouth, and we want to do our part to lend a loud voice in that effort!


So these are some of the things that we have planned for our blog, Facebook and Twitter pages in 2013, but we are always looking for suggestions on ways you think we could to add greater value to this community. What else would you like to see EB Resource tackle – blog topics you’d like to read about, voices you wish to hear from or other ways you would like to interact with us and with others in the EB community? We welcome your suggestions. Email us or leave us a comment here with your input.


And may you and your family have a beautiful new year!

Journaling: Should It Have a Place in Your Life?

*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.

Some people have discovered that a popular practice can offer therapeutic value: journaling. This is likely why online journals or blogs have exploded in popularity, as well. However, sometimes we may wish to communicate some deeply personal reflections without necessarily sharing them with the universe through an online blog. Journals can give us the freedom and “permission” to speak freely without consequence as we share our thoughts and feelings with no one to judge them. Journal entries also provide us with an opportunity to refer back to them later so we can reflect and examine where we’ve been emotionally at an earlier time in our lives.

Whether using a journal as a means of channeling emotions or fears through written word or maybe as a practical archive for information or feedback, there are a number of reasons you may want to consider adding journaling to your daily schedule.

Releasing the weight that pain, emotions or conflicted feelings may be carrying on our minds or hearts.

Artist and writer Lucia Capacchione shares in her article “Healing Through Writing and Drawing” at the International Association for Journal Writing website how she used writing as a coping tool. At the time, she had been misdiagnosed and was struggling with what doctors had deemed a “mysterious condition.” Instead of remaining lost, confused and angry, she turned to journaling as a means of healing. She began sketching and created a visual journal to reflect the emotions that were enveloping her as she dealt with medication side effects, fatigue and pain. Over time, as she became stronger, she added writing to her journal to accompany the imagery. Her journal ended up leading her to a new professional path, art therapy, which she has since used to help others.

Whether you are a caregiver, a family member or the patient suffering from EB, think about how you could use words and images to channel your private thoughts and emotions onto the page to help relieve any stress, fear, anger or confusion you may be feeling. Could you use a journal to help you deal with the repercussions of epidermolysis bullosa on you or your family on a daily basis?

Identifying the root of our thoughts and feelings.

David Simon, M.D., at notes in his article “The Healing Power of Journaling” that journaling also can be helpful at getting to the root of why we feel as we do, allowing us to pose questions to ourselves through the book that we must answer openly, honestly and thoroughly for no one’s eyes but our own. In this way, a journal can provide a window to what’s in our heart and head and, more importantly, to what led it to be that way. Why do you feel the way you do about your condition or about seeing your loved one experience the effects of living with EB every day? A journal can be a powerful tool to guide you to the answers.

Improving our mood and outlook to allow greater peace with the outcome.

Writer Felice Willat will tell you that there are numerous advantages to taking up the practice of journaling, but as she points out in her piece “Health Benefits of Journal Writing,” there one very important benefit: it makes us feel better! She even cites a study by Smyth and Pennebaker whose findings seem to point to greater clarity and deeper understanding for those participants who wrote in journals for four consecutive days for 15-30 minutes. Could allocating even just 10 minutes a day to write it all down, whatever you are feeling or going through, help improve your spirits?

Serving as a practical archive for important information and results.

Another useful purpose for a journal may be the most obvious of all: simply a tool to record the important events and discoveries as they happen in life. Could it be beneficial to you to have that one place you can go back to as an archive of sorts, listing how a particular wound care supply worked for the patient or to keep track of different reactions to certain meds or new foods introduced? Why not keep one central source to record all of this important information so you can easily look back to a date or a topic from an earlier time?

Are you currently using a journal? If so, please share what it has offered you personally. Blogs can be wonderful for bringing together people with common concerns and circumstances, but there may be times when you need to have a place where you can truly say exactly what you feel with no pressure, judgment or commentary, just a safe place to share what’s in your mind and heart. A journal could be that place.


Spring into Action

Spring. We love this time of year. For some of us, it may represent a season that's all about growth and renewal – spring cleaning, decluttering, blooming flowers and plants. We think it’s a great time to take inventory in other ways, including yearly resolutions and our goals.

This also is a great time to look ahead and make plans for you and your family when it comes to learning opportunities ahead. How can you add to your own repository of knowledge when it comes to EB? Most of us would agree that you can never gather too much information. So what can you do to pay it forward – with what you’ve learned, what you’ve gathered along the way or with any other ways to give back to others?

  • Share links and information — Have you been talking about starting your own blog about living with EB? Why not use this season to finally launch it? What other means could you use to share helpful websites or information you discover along your journey of educating yourself more about EB?
  • Donate extra supplies or materials – Occasionally, a family might find that a particular wound dressing or other supply item didn’t work specifically for their own situation, but it just might work for someone else. Inquire with groups like DebRA and EBMRF about ways to share any unopened and unused supplies with other patients and their families.
  • Make plans to connect with others – It’s great if you are able to attend DebRA’s Patient Care Conference in Orlando this summer, but if you can’t travel to Florida, why not look into a support group that meets somewhere in your state or a nearby state? Some groups may meet only once or twice a year, but it could offer a really valuable opportunity to get to talk one-on-one with people who completely relate to your challenges. Meet up and share information and experiences, and learn from each other in a completely open and welcoming environment.
  • Start planning your future fundraiser – Whether you plan a small springtime fundraiser or invest more time and effort into planning for your EB Awareness Week fundraiser in October, the key is to begin. This is a perfect time to start talking with others in the community about how they can lend their support and get a feel for what kinds of activities might draw attendees to your fundraiser event.
  • Recharge yourself – Why? Because you deserve it. If you’re a caregiver, you know how much energy the job requires. If you’re a family member on top of that, the emotional drain can take its toll as well. And if you are living with EB, it’s important for you to find means of building your strength, spirit and energy, and that may mean a low-impact activity that fuels the mind, too, such as swimming, yoga or meditation. You may find true inspiration by exploring artistic means of expression, such as writing, painting or photography. This is a wonderful time of year to invest in yourself because, after all, you have a lot ahead of you, and you’re going to need that stamina and good spirit!

What are some things you can do this spring to refocus your efforts to heal, to learn, to motivate and to inspire others to educate themselves about EB?

Strategies for Tackling Anxiety and Fear

*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.

Many people who have serious health issues, or who are caring for a loved one who does, can face increasing fear and anxiety about what seems like so many unknown variables and outcomes. For someone living with a challenging healthcare condition like epidermolysis bullosa, that fear and anxiety can stifle opportunities to better manage pain or to pursue personal goals. And for caregivers, fear and anxiety can be downright crippling and get in the way of fully giving to your mission of supporting the patient with EB – physically, mentally and emotionally.

We’ve gathered some pointers to help tackle the fear and anxiety that may follow a diagnosis of a disease like EB. As already noted, this by no means represents medical advice. You should always see a licensed healthcare professional for such guidance. These tips merely offer strategies that some people have used and found helpful during their challenges.

  • Make the mind-body connection, the link between mental health and physical health. The American Psychological Association provides an interactive diagram showing how men's and women’s stress levels can impact them physically. As someone living with EB or caring for another with EB, has the stress you’re feeling  taken a toll on you physically and mentally? Has your current set of circumstances impacted your former daily exercise routines? Eating habits? Sleeping schedule? Chances are, it has. How have those changes impacted your mental health, and are you feeling greater anxiety than in the past? Take that all-important first step to make the connection and begin looking at these various areas. Work toward addressing any changes that could be negatively impacting your present mental health state.
  • Inner Health Studio suggests the use of calming self-talk practices for alleviating anxiety. For some, simply recognizing those stressful occasions and repeating certain phrases can make a difference in their physical and mental state. Try phrases such as “I will get through this,” “this feeling will pass” or “I am anxious now, but soon I will be calm.”
  • Radio host Dr. Ben Kim shares thoughts on the practice of visualization and its ability to help people overcome emotional obstacles but suggests starting slowly, doing just a little bit daily. The practice of visualization involves creating positive memories over time based on goals you visualize and, through repetition, replacing current feelings of fear or anxiety with more positive feelings.
  • Anxiety Coach Dave Carbonell provides some helpful breathing exercises, including a step-by-step guide to proper belly breathing and a video demonstration by Carbonell. While he provides these exercises for people diagnosed with panic disorder or social phobia, they can also be useful for those who are carrying a lot of responsibilities and weight on their shoulders, such as EB family members or caregivers. Stopping for just a few moments to catch our breath when we may feel anxious or overwhelmed can be beneficial to both the caring supporter as well as the patient receiving the care.
  • Writer Susan Weed of encourages people to consider researching herbs that ease anxiety. She cites research suggesting that natural herbs such as nettle, oatstraw and motherwort have led to positive outcomes for some. However, as always, you should seek the guidance of your physician or a licensed registered nutritionist for information about natural dietary ways to cope with added anxiety or fear that may be impacting your life.