Posts belonging to Category 'Families'

The Economics of EB

For families living with epidermolysis bullosa, the pains that accompany it far surpass the physical and emotional impact. EB takes a tremendous toll financially on the family, too. This may not be something that others just learning about the disease may realize, so it’s our responsibility as EB advocates out in the community to share the full story.

Economically, EB hits us as families from every possible direction – medical bills, additional caregiver support, daily wound care supplies, the need to purchase special clothing or EB-friendly accessories or toiletries as opposed to what’s sitting on the clearance table at the local department store.

There are many things an EB family cannot do automatically or without careful forethought to ensure the safety and comfort of the person with EB. That inability to simply act on the cheapest alternative can be costly, whether you’re seeking out hard-to-find garments without buttons, elastic and scratchy zippers or trying to find special footwear.

What would you estimate your family pays in wound care materials on a monthly basis? For many of the families I talk to in the community, this figure can range anywhere from $5,000 to $10,000, or greater. Medical bills can drain families of thousands of dollars over the course of several months or a year. The impact that figures like these can take on a family’s budget is something that even those who may not fully comprehend EB could identify with.

Those of us directly faced with EB or even those who know of a neighboring family affected have an opportunity to educate others not only on the physical and emotional scars EB leaves, but the economic devastation the skin disorder inflicts. As you coordinate EB awareness events and fundraisers, find ways that you can convey this message, as well, to those who are first learning about EB.

Consider sharing this kind of information with other families during your educational process. The supporters you are seeking will already understand the costs associated with raising a family, but are more likely to empathize when they see the full impact EB takes on a family’s entire well-being.

Bringing Your Child’s School on Board

For parents of a child with EB, helping their child become acclimated to a new environment when he or she reaches school age can become their main mission.

It’s not uncommon for other parents, teachers or school administrators to initially raise questions about your child’s visible skin condition, particular when they most likely have never heard of EB nor understand it. There are some tools available and steps parents can take to help educate others and make the transition for their child as smooth as possible.

  • If your child will be starting school next fall, you may want to inquire with DebRA about the organization’s classroom DVD “What Is Epidermolysis Bullosa (EB)?” The short film is also available online and clocks in just under six minutes. It uses an analogy of grass and its roots to explain in simple language how skin impacted by EB is unable to adhere to layers below it, unlike the way a lawn’s roots adhere to the earth below it. Your child’s classmates, teacher and their families also get to hear from students in one school talk about their interaction with a young classmate with EB and from students with EB themselves. They attempt to dispel myths associated with EB and share ways that they may need additional support from others around the classroom or at play. Click here to access the film online at the DebRA website.
  • Some parents choose to schedule a meeting before the new school year with teachers and key administrators at the school. Such a conversation before the hectic pace of class assignments and activities can provide a great window of opportunity to educate them about the support a child with EB may need during the school day or extracurricular activities.
  • Parents may also seek out meetings before the school year where parents are invited to visit the school for activity sign-up or other class-related discussions. It can be a helpful way to introduce the topic in a conversational, informal atmosphere before children begin interacting with one another.
  • Some families have even developed a short half-sheet or one-sided page with information about EB that they then ask the teacher beforehand to distribute and send home with students on the first day, so that any potential questions or concerns can be addressed and also to encourage students in particular to support the teacher and classmate with EB wherever necessary.

If you are a parent who has already gone through the first day of school jitters with your child diagnosed with EB, what strategies and tips can you offer other parents to help their child’s transition to the classroom be a smooth, comfortable and safe one?

Family, Holidays and Managing Stress

The holidays are the perfect time for families to come together and set aside long distance and, in some cases, personal differences to celebrate the spirit of the season, peace and goodwill. We’re sure many of our families in the community will be getting together with their own extended family whether they are doing the traveling or others are coming for a visit.

The holidays can be a stressful time, and as caregivers and family members, we are unfortunately forced to get used to a steady stream of stress on a regular basis as we take care of our children and other loved ones. Toss into the mix outside forces like the added stress of holiday shopping, packed roads and parking lots, larger-than-normal expenses and houseguests or visitors dropping by for the holidays, it can compound an already demanding schedule.

Even when the holiday itself is over, some stress lingers. School-aged children are likely home from school for at least another week or two, out-of-town guests may be staying through New Year’s, and the decorations, opened gifts and lingering decorations and mess that accompany it are probably still part of the scenery.

We offer some helpful reminders to help you keep it all together.

  • Stop and take five. Make that 10, if you truly need it. Sometimes we forget that we have the power to stop in our lives at any point and simply rest … just for a moment. It may not feel like it sometimes, but a simple moment to meditate, go for a walk, take a 30-minute power-nap – all of these tactics can give us an extra boost or free our mind from built-up stress and aggravation and enable us to continue to be functional. Do whatever’s necessary to help yourself operate more smoothly.
  • Vent – however, wherever. If the stress of the holidays has become too hard to deal with any further and built up so much that it has nowhere left to go but to become misdirected, then stop it before it happens. Instead, find an outlet to channel it – an aerobic activity of some kind (jumping rope, swimming, a cycling class, kickboxing, etc.). Find a way to take out your pent-up energy and frustration in a positive and possibly even beneficial way for your body and mind.
  • Accept help. You may have added company in the house, but this also means extra sets of hands. It may not be easy to train anyone to help out with significant caregiving duties but perhaps while close family are staying with you, they can help pitch in other ways to lend a hand and free up your time to continue caring for a loved one and do those things that only you can handle.
  • Build in one “me” moment a day. Don’t let yourself get lost in the hectic pace of the season. Sometimes even just scheduling into your calendar one practice a day to allow yourself a little “me” time, a feel-good moment, can give you that extra burst of energy and patience necessary to push through a jam-packed to-do list and manage a full house of company. Whether it’s a manicure, foot soak, blocked off time to read for pleasure (not purpose) or a phone chat with a good friend, don’t neglect yourself because you need to be at 100% to be the best parent, caregiver and host. Never forget to give your own care priority in order to do this.
  • Don’t lose sight of the whole point of this time of year. The holidays should be about focusing on spending time with the people we care about. Take advantage of unexpected opportunities to visit with family and if there are dirty dishes on the counters or papers cluttering the den office area, so be it. Your guests will have to deal with it. You want to set a good example for your child of what the holidays are all about, and that means spending time with the people who mean most when opportunities present themselves. That is truly one of the most valuable lessons we can teach our kids.

Do you have any of your own suggestions you can offer other members of the community? Please feel free to share them here. We’d love to hear from you.

Traveling for the Holidays

EB families need to think ahead when it comes to long-distance travel.

November and December can be the beginning of a very busy time of year, but EB families who may be traveling long-distance by car or by plane to see others for the holidays have added stress as they attempt to "think of everything" in preparation of their journey.

Make sure that as you get your packing list and travel arrangements in order that you don’t forget to do the following:

  • Do your homework online about your destination before you travel. Jot down any important contact information for nearby medical support and drugstores or pharmacies closest to where you are staying.
  • Re-stock your emergency wound care kit to accommodate the amount of time you will be away from home or in traveling mode. Sometimes we can use these supplies on a few occasions and then forget to replenish again for longer trips.
  • Pack plenty of entertainment for the kids, including portable electronics and extra batteries and chargers where necessary. Traveling for long distances can be monotonous for anybody, so that’s reason enough to stock yourself and the kids with favorite things to keep minds preoccupied. Being in a different environment can be extra stressful as you try to carry out regular daily routines like bathing and bandaging in an unfamiliar and possibly less comfortable setting. So be certain to think ahead when it comes to these very important coping tools, as well.
  • Consider putting a fun trip-long activity in motion to give children a great way to be actively involved in the journey and push away fears from being away from home and the safety of their usual daily routines. For example, you can arm the kids with digital cameras and encourage them to take pictures of items on a travel checklist or keep a photo log of the journey from start to finish. Or suggest they do a journal or scrapbook by writing and preparing entries each day about that day’s sights, sounds and activities.
  • If you are driving by car and staying at a hotel, be sure to pack own additional soft or plush sheets and blankets to ensure comfort. If you're traveling by plane and are unable to pack your own linens, contact the hotel beforehand to inquire about blanket material and arrange to have extra pillows and sheets, if possible.
  • If you will be staying with family or friends, ask that efforts be made to ensure that any pets are restrained when entering the home to prevent any unwelcome injuries to those with fragile skin. You may also wish to ask your hosts to talk to any other small children beforehand about taking greater care around children with EB who may be staying with them to discourage any potential rough-housing during play.

Do you have any other suggestions that you can offer other families before they hit the road for their holiday adventures? We’d love for you to share them with the rest of the community here or on our Facebook or Twitter pages. Thanks!

Fun and Safety This Halloween

It takes planning and forethought for EB families to enjoy Halloween traditions.

 

 

For EB families, the Halloween traditions of dressing up and trick-or-treating are as much a staple of the fun holiday as for other families. However, friends and family members may not realize that it can take a little more planning and forethought than just picking out a costume or a bag of candy to ensure safety and comfort for children with EB. Now is a great time to share with others who may be taking part or contributing to your Halloween celebration what goes into the decision-making of EB families.

 

Costume Choices
Good friends or family members might ask if they can pitch in to help with this very important element of the holiday, but it’s important to remind them that when selecting a costume or putting one together, choice of materials is key. Look for soft, non-abrasive textures that won’t rub against sensitive skin and materials free from scratchy zippers or elastic. In place of plastic masks or other potentially aggravating accessories, create gentler, less scratchy alternatives using softer materials like cotton, felt and fleece. Similarly, comfortable footwear with added padding is so critical for young trick-or-treaters who wish to go from house to house. Some families find it helpful to incorporate decorated transportation into the Halloween celebration using padded wagons, bicycles and golf carts to allow kids a convenient way to rest their tired feet and avoid blistering.

 

Candy and Sweets
Even candy selections and other Halloween snacks and treats during the holidays require careful consideration. EB families may find it helpful to stick with smooth, moist sweets that don’t scratch the throat or create the potential for adhering to gums and teeth. For parties, incorporate healthy snacks with smooth edges like peeled apple chunks, grapes, olives and mushrooms and soft, more fluid desserts using puddings, gelatins and cream fillings. Avoid candies with pointy edges, rough surfaces or that feature caramel or gummy centers to opt for smoother, easier-to-swallow options.

 

In your own experience, what have you found helpful for ensuring a comfortable Halloween experience for your child? We’d love to hear from you and welcome your suggestions for costumes, accessories, footwear, party food, candy and general trick-or-treating safety tips.

 

We wish all of the families a fun, safe Halloween tomorrow night and can’t wait to hear all about it. And be sure to share pictures, too!

 

Living with EB

Families living with epidermolysis bullosa may feel sometimes like they are always explaining – explaining why a loved one must eat or not eat certain things; explaining why their skin looks as it does; or explaining why particular toys or seating works better than others in a classroom or play setting to protect their child from injury. It can be tiring and emotionally draining, not just taking all of the precautions themselves, but the constant state of explaining. But families do it because these precautions can truly be life-saving.

We are thankful that there are some resources that have become available over recent years to help families do this one especially tough job, educating others about their family member’s EB. We wanted to mention these again for anyone who may not be familiar with their availability and as a reminder to families who may not have referenced them lately but who did find some usefulness in the past. If you have any other helpful resources or links to suggest to our community members that have been particularly helpful to you in explaining EB to neighbors, school staff and students or even other family members, please share them here in the comments section or on our Facebook page.

  • DebRA’s EB Classroom Video
    The DVD “What Is Epidermolysis Bullosa?" can be especially helpful in breaking down what living with EB is like for families and how students, teachers and other school personnel can support a family’s efforts to keep the student with EB as healthy and safe as possible from the moment he or she arrives in the classroom every day. To order this free DVD from DebRA of America, click here.
     
  • National Institutes of Health (NIH) Q&A about Epidermolysis Bullosa
    A helpful list of some of the most commonly asked questions about EB and their answers are available from the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) at the NIH site. Click here to check it out and consider adding a bookmark so that the next time a friend or acquaintance inquires, you have a handy link to send.
     
  • Dr. Alfred Lane’s Discussion of EB Research and Treatment
    This is a simple 4-year-old video uploaded to YouTube that features the dermatology department chair and EB researcher from Lucile Packard Children’s Hospital at Stanford University, but it does such a good job of breaking down a complex disease and what scientists are hoping to uncover in their clinical research. Click here to see it for yourself and consider forwarding to others who could use the information.
     
  • Garrett: The Boy Beneath the Bandages
    It is no surprise to anyone watching it that this short film was the winner of the 2010 Rare Disease Day Video Contest. Photographer Andre Hermann mixes images with poignant music, audio and film footage of a day in the life of young Garrett and his family as they cope with the pain and challenges of living with EB. Click here to view part one. (The remainder of it, part two, can be viewed by clicking here.) If ever there were a way to “show” someone else life with EB, this may be the fastest, most compelling way to do so. What are your own thoughts on the video?
     
  • EB Public Service Announcement
    Previously, we posted at our blog this public service announcement video, which has also aired in various parts of the country, in an effort to educate people about EB and what it means for the individuals and families it impacts.
     
  • EB Resource
    We hope that you’ll consider our blog and Facebook community helpful tools that you can also introduce to family and friends as a way of explaining more about EB and what kinds of issues our community members face on a daily basis. In fact, one of our most popular blogs was a special one we did last summer, “100 Links for EB Families,” which featured 100 different EB-related links worth sharing. As you might expect, we learned afterward that we had not even scratched the surface and have since found several more helpful resources, but this blog could be a good starting point in trying to familiarize a distant family member or a friend about epidermolysis bullosa. So consider emailing the the link!

Travel Tips for EB Families

Summer can a be a great time for families to reconnect on vacation as they travel to visit faraway family and friends or experience unfamiliar places, creating memories along the way. But for an EB family, traveling can present some challenges. If you are gearing up for summer travel, we offer a few tips for being as ready as possible to handle anything that comes up and minimize the stress.

  • Be prepared. Most likely, you’ve gathered some essentials into a personal wound care “emergency kit” that you already travel with. This is the perfect time to restock any supplies in your kit so you are ready for any kind of skin emergency that may come up.
     
  • Pack generously. This can be a sweltering time of year wherever you may be traveling but especially here in the U.S. Have back-up shirts and other apparel handy so wet clothing can be replaced if necessary to prevent any potential friction caused by damp garments.
     
  • Wear dark colors. According to the Centers for Disease Control, wearing darker clothing instead of light-colored apparel can be more protective of the skin against UV radiation. By sticking with these darker shades, the family has a greater chance of warding off the dangers of the sun to delicate skin.
     
  • Remember your other friendly sun protectors! Make sure you pack the wide-brimmed hats, sunscreen, long-sleeved loose-fitting shirts, umbrellas and other coverings to keep dangerous UV rays at bay. Be especially careful to bring along coverings to protect fragile parts of the skin like ear lobes and the scalp.
     
  • BYOB – bring your own bedding. For many EB patients, a comfortable sleep depends on an extra soft pillowcase and pillow, as well as extremely soft sheets or blankets that sooth the skin without scratching. If you are driving to your destination, packing these extra bedding supplies shouldn’t be too difficult. Think ahead about this very important daily activity and ensuring that your loved one is comfortable when coming down from the busy vacation day’s events.
     
  • Stock up on EB-friendly snacks and drinks. Nothing is worse than being in the middle of nowhere and having few choices for those who depend on soft and smooth foods and drinks that won’t scratch a tender throat, tongue or gums. Depending on what shopping options will be available at your locale, you may want to supply yourself with a good variety of healthy and EB-friendly foods and beverages. If traveling by car, pack a cooler or two, to ensure that you’ll always have something handy to munch on or sip.
     
  • Pace yourself. If you have any control over your travel schedule at all, give yourself ample downtime between making visits and going to attractions. Both caregivers and your loved one will appreciate some time to relax and re-charge. Don’t overbook yourself too much.

Do you have some travel tips of your own? We welcome your input and ideas. Please share!

 

Ideas for an Extra-Special Birthday

In the past few years, we’ve noticed a growing number of sites and tools that allow people to set up online fundraisers as individuals, school clubs and community groups. We think one of the most innovative and selfless ways to use such tools is as an alternative to traditional birthday celebrations — taking what otherwise would be a special occasion personally and making it beneficial to others instead.

So what are some things that you, a friend or family member could do to benefit a favorite EB-focused organization when a birthday arrives? Here are some ideas! (And be sure to pass along to some of your fellow co-workers, neighbors or classmates’ parents.)

  • Set up a “cause” page through Causes.com to suggest to others they donate to a good cause in honor of your birthday. Use the opportunity to encourage them to support a favorite EB-focused nonprofit, and if it isn’t registered, inquire about how to make this happen.
     
  • Post on your Facebook page that you appreciate the good wishes and e-cards but in lieu of gifts, you’d prefer they give to your favorite EB charity.
     
  • Contact your favorite local restaurant about holding your birthday celebration with family and friends at their place and ask if they would be willing to donate a portion of the evening’s sales to your EB nonprofit of choice.
     
  • Host a “party-with-a-cause” birthday celebration and ask guests to bring donations or items for EB families based on an EB nonprofit’s wish list of frequently needed supplies.
     
  • Use a unique online fundraising tool, MyDunkTank.com, to launch a special birthday contest or promotion with some fun and flair. Last February, we blogged part 2 of our chat with EB Friends forum creator Chris “Pez” Matthai during which he discussed his own “I’ll Do Anything for EB Awareness” Challenge that he launched during EB Awareness Month 2010. In that campaign, whichever proposed “challenge” raised the most money, Chris would have to perform it, from dressing as a clown and roaming the streets of NYC to singing “I’m a Little Teapot” throughout Central Park (the latter which won, by the way). Get creative and have fun with your special day and let your friends and family have a little fun at your expense, all for a good cause!

Have you found some creative ways to transform a birthday or other important occasion into an effective EB fundraiser? We’d love to hear from you with your own ideas and previous event experiences. Just email us at leslie.rader@hollisterwoundcare.com, and if we get enough reader suggestions, we’ll feature a follow-up blog on the subject later this winter.

The Helping Spirit of EB Families

On a weekly and sometimes daily basis, I talk with people and their families impacted by EB. There’s my work through Hollister Wound Care, which frequently intersects with existing and new customers, and my role assisting DebRA by working with new families to get them off the ground with preliminary information and initial wound care supplies. But for me, this mission to support those whose lives are changed by a single diagnosis is personal, and one for which my whole family relates, as well. Yet throughout these many communications and interactions, I continue to be amazed at people’s strength and sincerity to help each other across the EB community.

Many of us may currently find ourselves caught up in annual holiday traditions that may leave us fretting about the little things as we battle it out in shopping aisles, traffic jams and overflowing parking lots. But in our unique community, we are reminded every day of what truly matters, and there are special people who recognize the potential power of one single outstretched hand. We might witness it through the response to a question posed in an EB Friends forum, the sharing of feedback about a so-called “EB-friendly” product on platforms like Facebook or Twitter, or the honest and frank revelations through a day-in-the-life account of a patient or family coping with EB through the words of a mommy blogger or through video footage captured and uploaded on a personal YouTube channel.

This is a time of year when we can get lost in the ultimately insignificant details or we can embrace the generosity surrounding us, and we see this gracious spirit demonstrated regularly on the EB Resource Facebook page every day. We may pose a question to the community, asking for personal experience and insight, and perhaps those trained to be caregivers and sources of valuable clinical information chime in or parents presently trying to manage the day-to-day stresses of living with EB offer their input. For others who wish to continue being a part of the community, it can be difficult but feel necessary to remain part of the conversation to help others as they may need to set aside their own pain of a lost loved one for the sole purpose of helping another individual or family navigate unfamiliar territory.

The spirit of the EB community is a wonderful lesson in human compassion, and what better time to reflect on this spirit and appreciate it for its honesty and relevance than during what otherwise is likely to be the most hectic time of year. We could use this important reminder right about now. So it’s okay if you don’t find that in-demand e-reader everyone has been talking about or locate the absolutely best pair of jeans on the planet for the loved one who has been hounding you for them this holiday season. It may seem necessary and important, but we know that with community, compassion and the power of sharing, we have all that we need this holiday season and it’s across the various platforms where friendly faces and encouraging voices touched by EB connect.

We don’t need to use the word “friend” loosely in this Facebook community. And as we grow, we only become stronger.

Good luck out there weeding through the daily details – then, when you can, come back to join our very real and rewarding conversation. All of us will be here for you. You can count on that.