I just recently got back from my first ever visit to Camp Dermadillo, part of the Camp Discovery program coordinated by the American Academy of Dermatology for young people with chronic skin conditions. While they are there, participants can take part in fun camping activities like fishing, swimming, boating and hiking with other young people living with similar skin conditions, with the safety and security of onsite dermatologists and nurses at the camp.

While I was there, I served as a camp counselor. There were about 72 campers from all over the U.S. and one international camper from Nigeria. To attend, camper had to be nominated by their doctors. Because this camp is extended to people with a variety of skin conditions, I learned a lot about many other skin conditions that I had never heard of before or seen. I encountered over 20 different kinds of conditions and many of them, very rare.

As for the other camp counselors, most of them were third- or fourth-year dermatology residents, so it was great to get to know them as well and tell them all about our EB Resources community in case they work with an EB patient in the future. They can share all about our community with those patients and let them know there’s a place to voice, listen and learn from one another about EB.

I was really impressed with how well-organized the camp was managed. The kids seemed to have a great time and there was so much for them to do – horseback riding, biking, canoes, fishing, archery, noodle hockey, dance, panning for gold and plenty of nature activities. The high rope with the zip line was the big hit with my cabin group. And the camp did a really good job of alternating the kinds of activities and themes from day to day, like one morning was water day with a slip and slide, musical tubes (like musical chairs), relay races involving the water and much more. Then they had plenty of fun nighttime activities. A med-flight helicopter landed at camp and the kids got a chance to meet the medical staff and take turns sitting in the helicopter. There was a magician and a carnival, sports and board game night, even a talent show! On the last night, the kids got to experience limo rides, perfect since the overall theme of the week was “The Oscars.”

I loved my cabin group, made up of girls ages 8-9. We had a ball the last night dressing up for our own “Oscars Night,” boas around their necks, decked out in fancy dress-up clothes. The moment they announced that a limo was waiting for everyone, the girls screamed with excitement! Once we were in the limo, one little girl said, “This is just like my daydreams.” She was so adorable. I especially loved watching the kids help one another. If one of them would get homesick, the others really made an effort to cheer that person up. I watched older kids let younger kids go first in line or sometimes even let them win a game to improve the little camper’s confidence. It was really heartwarming to watch.

Camp Dermadillo is a great way for children with EB to experience independence and for parents to be completely at ease that their children will be well taken care of during the week. Each cabin has four counselors plus a doctor (most of the cabin counselors are also dermatology residents). The dermatologist would be with us during all of our activities, and medications would be given at needed times during the day. The infirmary also had a bathtub in case that was needed by any camper.

I know that it can be very scary for us as parents to let go for a week or even an hour, but it truly benefits our kids to get the chance to be with other kids just like them or a kid dealing with similar issues or the stares that sometimes happen. Watching the kids come out of their shells and feel good about themselves are moments that should not be denied.

If you should happen to send your child to such a camp like Camp Dermadillo in the future, go all out when packing. Usually, the camp will send parents a list of things to bring to camp beforehand and there may be a different color theme each day for clothing. For example, on red day, kids might wear a red t-shirt, red shorts, red beads or silly bandz, red hair ribbons or bandanas. They had fun with it and that’s what you should do when you take part in a camp like this. I too tried to wear the color each day which wasn’t always easy, but always made for interesting pictures! And I’m very proud to say that on Awards Night, I was given the official Dynamic Dermadillo Diva Award, an honor that I will treasure.

All in all, I was so impressed with the staff at Camp for All who host and lead all of the activities for each camp that attends throughout the year. I highly recommend parents look into what the camp involves and if interested, talk to their physician about suggesting them for one of next year’s camps.

Erik’s Story

Kathy Barnes, Mom to 6-year-old Erik, RDEB-HS

Last week, Maryland mom Kathy Barnes shared what it’s like to walk in the shoes of a mother and her child with EB, in this case, she and her son Erik. What she didn’t share then was that Erik’s condition came as no surprise to the family, who welcomed the baby into their home not as a natural-born son but as a foster child whom they later adopted. Kathy shares firsthand how they’ve learned to tackle EB every day together as a family. But first, she starts at the beginning of the story and what led to the family’s decision to embrace the new challenge of foster care.

I had finally reached the point in my life when I had finished the job of home schooling my three kids. I was thinking, "YES! Now I have the time to do what I want to do" and I had a list! It wasn’t long before God placed a burden on my heart that I needed to get a job.

I spent many days, it seemed scanning the want ads looking for the right job, but nothing struck my fancy. Finally there it was, a big ad expressing the great need for Medical Foster Care. I knew that was it! I circled it in red and wrote, "This is what I want to do!"

In what I now know was much faster time than usual we were through the process and licensed for medical foster care. I believe that God specifically had Erik in mind for us so our time of getting approved and licensed came as Erik needed a home.

When we were first told about Erik and his rare genetic skin condition, where he is missing the part of the skin that keeps it attached, (Recessive Dystrophic Epidermolysis Bullosa), I said, "I didn’t think we would take him,” because it sounded so severe and we wanted a child who would be able to participate in our family life. But they encouraged us to just come and meet him. Well, that is all it took. There was no way we could turn away this precious baby.

So after a month of traveling to Washington, D.C. to learn how to care of Erik’s specific needs, Erik came home to be a part of our family. It was instant love! He had lived in a hospital for the first nine months of his life and was delighted with seeing the world outside of the hospital.

On May 5, 2006, Erik officially became a part of our family when we adopted him. He is now a typical 6-year-old who loves to zoom around in his go-cart.

God has truly blessed us with Erik. He is an extraordinary child and deals amazingly well with the pain that is caused by his condition. Erik is such a blessing that we can’t imagine life without him. If it wasn’t for his bandages making his disorder obvious, you would never know by his behavior that he has anything wrong with him.

We have been working to make the last week in October Epidermolysis Awareness week in Maryland, and as a part of that effort "The Frederick News Post" came out to interview us. The reporter wrote an excellent article, which can be viewed online at http://www.fredericknewspost.com/sections/news/display.htm?StoryID=53554

Through awareness efforts, we are hoping to generate more funding for research as well as increased public awareness, which will hopefully decrease some of the rude comments we sometimes hear while out in public. I would much rather someone would outright ask me questions than to mumble comments about what they speculate must have happened to him as they pass by.

Epidermolysis Bullosa is so rare that it can be very difficult to find a doctor that is knowledgeable in treating the specific health needs of these patients. We have found a great deal of help chatting with others online who are dealing with Epidermolysis Bullosa. As a result of this connection and the newspaper article, we were asked if there was anything we needed for Erik, because a group of company executives in California were getting together to do a "Make a Wish" type of dinner specifically for people with Epidermolysis Bullosa. Immediately I knew what to ask for. I have been making Erik’s shoes because it is impossible to buy a pair that fits over his bandages and doesn’t cause more injury. The sewing machine I have been using is more than 40 years old and I nursed it, moaning and groaning, through the last pair. So I asked for a sewing machine, specifically the Bernina 440. Because as I had been looking, it was the only one that I found could satisfactorily sew through four layers of leather.

We were highly elated when we were called and informed that we were chosen by the company executive of Skechers, to receive our “wish.”

Anyway, here I am, a grandmother and starting a new family. It wasn’t exactly what I had planned, but I feel this is the ministry God has called me to. And even though it is sometimes an exhausting adventure, it is also a great blessing. I want to encourage others not to seek to fulfill their own desires but to ask God to give them an area of ministry. It may not be in foster care (though the need is great) but if you don’t feel called to something specific, ask God to show you the area of ministry to which he is calling you. Then pursue it! You will find yourself blessed beyond your imagination.

Living with Recessive Dystrophic Epidermolysis Bullosa

Kathy Barnes, Mom to 6-year-old Erik, RDEB-HS

From time to time, we want to share some of the personal stories from some of our EB patients and their families who are a part of the EB Resource community – in their own words.

This week, we introduce part one of two from the Barnes family of Keymar, Maryland. Here, a mother challenges those who may not understand her child’s condition to an opportunity to learn about the pains, fears, frustrations and challenges experienced every day by a patient diagnosed with Recessive Dystrophic Epidermolysis Bullosa and his family.

Thank you, Kathy, for sharing your family’s story.

Just for a moment take a walk in my shoes, or better yet, take a walk in Erik’s shoes.

Try to imagine living a life where you have never known a day without pain. It is always there. Yet in the midst of a life filled with sometimes excruciating pain, lives a boy full of joy and the excitement of living. To see the smile on his face and watch him run and play, one would never guess the horrible, nagging pain that his bandages cover, pain that is a part of everything he is and does. He is determined to live and experience the wonder of being a little boy.

Erik is usually happy. But still lurking is the ever present pain and the realization that one small misstep or fall could create painful wounds that can take anywhere from a week to a year or more to heal. On top of all of this pain, other procedures lurk. Like today, I am in the waiting room while Erik has an esophageal dilatation in the operating room, so his throat doesn’t grow closed with scar tissue.

How does someone so tenderly young deal with a life of pain and fearful procedures? There are many days when the monster of pain and fear lurk underneath and make it difficult to deal with everyday life issues. Things become magnified and changes are difficult to deal with, whether he’s trying to get along with peers or like yesterday when he threw a cup across the room. How else is a 6-year-old who knows he is about to face another day in the operating room supposed to deal with things?

Walk a day in our shoes before you make a judgment or label him a bad boy. If you have some wonderful formula or advice to help a little boy deal with the monster in his life, because it is very real, share it. We are always willing to listen. But first, walk in our shoes.

Come walk in my shoes as a mother who wants to see her child live, have fun and experience the adventures that every little boy should, yet cringes as she watches, waiting for the next wound to happen.

Walk with me, as a loving mother cuts into blisters and cleans painful wounds in order to allow them to heal. Erik’s blisters have to be opened or they will continue to grow, making a larger more painful wound. I deal with it like a part of the normal routine and flow of life most of the time, but there are days I have to cry along with him and pray for healing, wishing that life could be more fair.

Yes, there are good days, when things aren’t so bad, but there are many days when even every step is painful, because of wounds on the bottom of Erik’s feet. Just think, could you walk in his shoes – full of pain and still be exuberant simply to be alive? Erik does. I would curl up in bed and not want to face the day if I had to live with the pain that he deals with on a daily basis.

So walk a day with me. See that I am not a special person; I am the same as any mother, loving her child and wanting the best for him. Erik is the champ. I am privileged and blessed to be his mother.

Returning to school after summer can be an exciting and hectic time for kids and their parents. For children with EB, it can be a little stressful, making those introductions and facing potential stares and confusion from others, especially in new classrooms or schools. Whether your child is just entering school for the first time or moving between grade levels which could mean meeting up with new students and teachers unfamiliar with their condition, it is important for you as a parent and a neighbor to be an open, accessible resource to answer other parents’ questions about EB. By offering information and helpful tools where needed to the school and other families, you can help support your child throughout what could be a confusing and scary transition.

There are some things that you can do to streamline the process of integrating your child into a new schedule and school environment, as well as some resources to help you communicate with the school and other families about EB. Here are ten suggestions gathered from various sources including www.debra.org, www.ebfriends.ning.com and parents just like you.

1. Provide the teacher and the school nurse with information about DebRA including the website (www.debra.org) and email address for the DebRA nurse educator, Geri Kelly-Mancuso RN (debranursec@yahoo.com) to reach out to with any specific EB care questions.
2. Supply the teacher with a storage box containing different types of bandage materials clearly marked with numbers to designate order for application of the bandages. You may wish to include needles, scissors and any ointments in a separate baggie within this storage box, too.
3. Send the child with a fitted chair pad for his/her regular classroom seat to provide greater comfort and lessen risk of skin friction or irritation. If the child’s legs dangle from the chair, a small stepstool could be added to minimize extra strain or stretching at the back of the child’s legs.
4. Schedule a time outside of class to meet with the teacher and demonstrate a partial bandage change to better explain the various kinds of blisters and ways to handle them as well as the care required during wound dressings.
5. Work closely with the teacher and the school to establish a care chain of command for your child in the event that an accident or injury does occur on the premises. Specifically, have three people in place in case of emergency and confirm that it is included within your child’s student record.

1. Encourage your child to speak up at school and notify the teacher before any situation that could cause him/her blistering or injury. Let the teacher and the students know the safe limits for physical interaction and play.
2. For field trips, ensure that whomever is leading the children has an emergency pack of bandage materials with them since a parent will not always be able to join the child on the excursion.
3. Introduce a helpful two-part video to the teacher for the class. The Children’s Hospital of Colorado has produced a school video called “What is EB? and Your Welcoming Classroom.” The first segment, “What Is EB?” is approximately six minutes long and designed to familiarize students and teachers with some of the issues that face children with EB everyday and encouraging students to help their classmate feel more accepted and less isolated. The second part, “Your Welcoming Classroom,” is just over 17 minutes long and offers teachers and other school personnel a means to open a critical communication channel between the child, family, medical community and school contacts. The video is available for free through DebRA.
4. Always pack a change of clothes, sunglasses and a pair of slippers in your child’s schoolbag in the event of drainage, lengthy time spent outdoors or additional blistering of the feet.
5. Initiate communication directly with parents of your child’s classmates by asking the child’s teacher if a letter can be sent home with the other students for their parents. I’ve attached a sample template below that can be modified for a child of any school age. Make certain it’s understood that as parents, you are available to clear up any confusion by talking with the other parents by phone, email or in-person to answer any questions at all.

August XX, 2010

Dear Parents of Preschool Children in Miss Smith’s Class,

Our son/daughter, Child’s Name, will be attending class with your children this school year. Child’s Name is an outgoing, intelligent and funny child who suffers from a rare genetic disorder that causes his/her skin to be very fragile. The condition is called epidermolysis bullosa or EB for short.

Child’s Name is much like any other child with the exception that excessive heat, humidity, or friction causes his/her skin to blister or tear off. As a result, child’s name often has what children so sweetly refer to as a lot of “boo boos.” Child’s Name’s wounds are similar to those of a burn victim. He/She will frequently wear bandages to protect his/her wounds and facilitate healing. This condition is not contagious. In fact, germs from other people pose much more of a threat to the child with EB than vice versa.

Child’s Name has many close friends that he/she plays with regularly. Our experience is that your children will get to know child’s name as a person and over time, will no longer notice the blemishes on his/her skin.

We strongly believe (like all of you I’m sure) that knowledge can alleviate many fears and misconceptions. We welcome your questions, so please do not hesitate to approach us during the school year. In the meantime, the following websites will provide you with helpful information about epidermolysis bullosa: www.debra.org, www.befriendeb.com, and www.ebkids.org.

We are committed to helping our child live as normal a life as possible. We look forward to getting to know each of you and your children. This is a very exciting time for all of us!

Warm regards,

Your name

*This content is provided for informational purposes only and is not intended to be a substitute for the advice of your personal dentist or other health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your dentist or other health care provider.

Dental care can be a stressful, complicated process for parents of children with EB. We asked a dental specialist, Mark L. Cannon, D.D.S. M.S., of Long Grove, IL, for some guidance about what families should make their biggest priorities in selecting a specialist and understanding what precautions should be taken with an EB dental patient.

EB Resource (EB): What is the greatest concern parents express about their children’s oral health?

Dr. Mark L. Cannon (Dr. C): The most important component of oral care for children with Epidermolysis Bullosa is prevention. Both the American Academy of Pediatrics and the American Academy of Pediatric Dentistry recommend the first dental visit to be at age one. This is true for the general population; however, children who have medical conditions or other special needs should consult with a specialist as soon as the incisors start to erupt.

EB: What type of dental specialist should parents look for?

Dr. C: Most pediatric dentists are hospital trained and have completed their residency at a major pediatric medical center. They have received extensive training in the total care of young patients with virtually all medical conditions. My own first exposure to patients with EB was during my residency at Children’s Memorial Hospital in Chicago, Illinois.

EB: Are there specific preventive treatments for patients with EB?

Dr. C: Indeed, there are many preventive procedures now available that weren’t around when I was in my residency. MI Paste, minimum intervention paste, is a cream that is applied to the teeth every night. The cream contains high levels of amorphous calcium phosphate (calcium and phosphate that is bioavailable, actively benefiting the patient) and casein phosphopeptide (a pre-protein from dairy sources that inhibits cavities as effectively as fluoride). MI Paste is safe if accidentally swallowed, unlike many high fluoride products, so it is ideal for little children. Our EB patients are all using MI Paste and so far we have not experienced any enamel breakdown!

Fluoride varnishes replace many of the old ways of topically applying fluoride. It adheres well to the teeth and the dose to the patient is no more than what happens when brushing with fluoride toothpaste. Older methods of fluoride application often required the use of a foam tray that could irritate the inside of the mouth. Fluoride varnish helps the enamel to become more acid resistant and is well tolerated by almost all patients.

Therapeutic sealants release fluoride or calcium phosphate into the surrounding teeth. Also, therapeutic sealants are easier to apply than the older types of sealants because they do not require a perfectly dry tooth surface prior to placement. The ease of application is important because that potentially reduces oral structure manipulation and should minimize the formation of bulla following sealant application.

There are so many wonderful xylitol products that help prevent decay. Xylitol is a naturally occurring sweetener that is found in birch trees, plums and many berries. Xylitol is not digested by pathogenic bacteria so it inhibits their growth. Xylitol is used in lollipops, candy, sprays, varnishes and other dental applications to help prevent decay. The lollipops also may contain Chinese licorice root, another natural inhibitor of cavity producing bacteria.

The use of probiotic supplements is also important. Whenever there are any changes to the oral environment the type of bacteria found in the oral microflora is also changed. Many medications have also been associated with saliva reduction that not only decrease the saliva’s buffering and antibody capability but may increase the growth of unhealthy (pathogenic) bacteria. Probiotics is defined by the World Health Organization as “live microorganisms which when administered in adequate amounts confer a health benefit on the host”. Probiotics has created a great amount of interest and has resulted with a “surge” in published research. InI2006 there were 528 hits in the Pub Med data base for the Key word “probiotic” and 47 human studies reported. Articles on Probiotics Therapy have been published in numerous refereed Medical Journals, including the Archives of Disease of the Child, Pediatrics, Journal of Pediatrics, Journal of Clinical Immunology and Allergy, Lancet and many others too numerous to mention. The preponderance of the publications reported positive results for Probiotic Therapy as an important adjunct in the treatment of a host of pathologic processes.

EB: How do Probiotics work?

Dr. C: Beneficial bacteria work by preventing the growth of pathogens; with competitive displacement of pathogens, by regulating gut microbial ecosystems, with improving gut function/nutritional uptake and by modulating immune responses to improve health. By augmenting the natural L. reuteri colonization in humans positive health effects have been reported. A Swedish company, BioGaia, has produced probiotic supplements for Dental applications. The Probiotic Lactobacilli reuteri is available in the following formats; as a Probiotic chewing gum, Probiotic Drops, Probiotic chewables, Probiotic straws and lozenges. These convenient application formats allows for the Probiotic Therapy of all types of patients; infants, disabled, teen or adult. These applications contain Lactobacillus reuteri strain ATCC 55730, an extensively studied strain that colonizes the stomach and intestine after ingesting the tablets. The colonization results in a significant boost to the immune system and has been reported as significantly reducing the level of pathogenic (bad) bacteria and significantly decreasing the effects of periodontal (gum) disease. Many of our patients utilize probiotic supplements to reduce the risk of dental disease.

EB: What diagnostic testing is recommended for the development of a proper preventive regimen for EB patients?

Dr. C: The CRT bacteria (Caries Risk) Test allows the pediatric dentist to categorize the patient’s plaque and saliva as to the quantity of disease causing bacteria. It does not however distinguish between the many Lactobacilli species some of which are beneficial. It also takes 48 hours for the cultured colonies to develop on the test agar delaying diagnosis. Saliva Check mutans test takes 15 minutes for results. This is a distinct advantage as the test may be accomplished during hygiene or sealant visits for patients, encouraging the use of such a test by dental auxiliaries, for example, dental hygienists. The Cariescreen Test from Oral Biotech is the simplest test to perform and also the quickest. It does not measure any specific pathogenic marker. Instead, the test measures the amount of ATP, adenosine tri-phosphate, in the plaque. High levels of ATP are associated with pathogenic bacteria because the acid environment requires a higher cell metabolism rate, hence higher levels of ATP. The Cariescreen test only takes 15 seconds to perform after calibration.

EB: What happens if the patient starts to get cavities?

Dr. C: Small cavities may be treated with ART, atraumatic restorative technique, whereas the patient does not require an anesthetic. The surface of the cavity is gently removed and a re-mineralizing filling material is bonded into the cavity. The remaining decay is hardened and the decay process stopped or reversed with this technique. This technique is very useful with small children and patients with a history of previous negative medical experiences.

EB: What precautions should the pediatric dentist take doing treatment?

Dr. C: The gloves should be lubricated to reduce friction on the patient’s oral area. If a rubber dam is used for a filling procedure, the rubber dam should also be lubricated. A rubber dam is a sheet of rubber that holds the cheek and lips away from the area the dentist is working on. The rubber dam also protects the airway, which is vitally important!

EB: What happens if it too late to start the preventive care and some of the teeth have already become carious?

Dr. C: Restoration of the child’s dentition (teeth) may be accomplished with either sedation or general anesthesia. Treatment under either sedation or general anesthesia should be performed in a Pediatric Medical Facility by experienced Pediatric Dentists working with Pediatric Anesthesiologists. This will ensure the safest treatment method possible.

A special thanks to Dr. Cannon for sharing his insight with our readers.

Mark L. Cannon D.D.S.M.S.
Associated Dental Specialists
Grove Medical Center, Suite 308 – RFD 4160
Long Grove, IL 60047
Tel: (847)634-6166
specialdental@comcast.net

It’s been a little over a month since the Patient Care Conference, and I’ve seen people still sharing their thoughts about this year’s event in groups like the EB Friends Ning. I have already posted a few photo albums with PCC pics at the Facebook page. Did you get a chance to see them?

This year’s conference was my third PCC that I’ve attended. As you may already know, DebRA holds these events every other year. At previous conferences, I took part as a kid’s room organizer, as part of the New Family Advocate Program, and Wound Care Clearing House for DebRA. This year’s event was my first chance to interact with others as Hollister Wound Care’s Coordinator of EB Affairs. I always enjoy seeing the kids at these events, especially how much they’ve grown. And I especially like listening to the physicians share news about the latest advances in wound care and news about the progress of their clinical trials.

Hollister Wound Care sponsored the kids’ room during the presentations. While speakers like Dr. Arbuckle, Dr. Wagner, Dr. Morel, Dr. Lucky and Dr. Paller were taking the stage, an energetic crew of volunteers kept our younger attendees busy and did our best to make the kids’ room a fun place to be while moms and dads learned from the doctors who were presenting.

This year’s fun side trip was a great success – a trip to the Newport Aquarium. I was glad that Hollister Wound Care could sponsor such a fun event. All of the families had such a great time and kids loved the sea urchin giveaways, too. Several were putting them on their feet, on the control knobs of their wheelchairs, even on their noses! It was hilarious to see the joy on their faces during this fun outing.

What always seems to be one of the most beneficial aspects of the conference is that opportunity to connect – caregivers with other caregivers, parents with other parents and especially, patients with other patients. And the value of attending can mean different things to different people. For instance, for some, the biggest benefit is the information and ideas shared by speakers. For others, it’s the friendships, advice and support that often develop.

If EB families haven’t gotten an opportunity before, I’d strongly urge them to take part in the future at least once and experience it for themselves. But for those who missed this year’s event, there will be DVDs available soon from one of the event’s sponsors, National Rehab, so that way those unable to be there in person can still take away the helpful information provided at the conference.

Were you able to attend this year’s PCC? If so, what did you think? I’d love to hear from you. Please send me your thoughts on what you enjoyed most at this year’s event and any photo links from the event that we can share with the rest of the EB Resource community. Just email me at leslie.rader@hollisterwoundcare.com.

In a few weeks, United Survivors with Epidermolysis Bullosa (USeb) will host its annual EB Survivors Camp for people with any type of EB, ages 13 and older. The camp runs August 1-7 and will be held at the National Ability Center in Park City, UT.

This year’s camp will include planned activities as well as a mentoring program to allow participants to really explore their unique interests in a fun, accepting environment.

The lodge at the National Ability Center has 24 individual rooms, each with private bathing facilities to give guests privacy during daily dressing changes. The camp features a friendly staff including doctors and nurses with experience working closely with EB patients and their families. And the kitchen offers an EB-friendly menu to help mealtime be as stress-free as possible.

We recently asked one of the camp’s facilitators Jamie Hartley, chairman and president of USeb, about this year’s camp which is specially designed to accommodate people of all abilities with a variety of adaptive activities that everyone can try.

EB RESOURCE (EBR): How many years have these camps been held?

JAMIE HARTLEY (JH): This is our second year of EB Survivors Camp.

EBR: What is the general mood and atmosphere at an EB Survivors Camp?

JH: Camp is an exciting atmosphere where people get to reunite with friends they may only see perhaps once a year, and it is also very exciting to meet new friends who have EB. Since it is run by people with EB, there is a great feeling of understanding. Everyone is dealing with the same issues, so suddenly anything usually noticeably different becomes commonplace. Also, the excitement comes from our focus on our abilities, our talents and exploring new options that are not usually available to us, but with the adaptive equipment and know-how of the National Ability Center, we can do rock climbing, horseback riding, biking, water-skiing and more, which normally would be out of the question.

EBR: How many kids will be taking part in this year’s camp?

JH: There will be 25 people with EB at camp this year.

EBR: Any specifics you can tell me about this year’s camp agenda – special outings, planned activities, any other special guests or features that campers and their families might want to know about?

JH: Just for fun we have planned holiday theme days so that we can fit in a whole year’s worth of being together, we will celebrate Valentines Day, Easter, everyone’s birthdays, April Fools Day, Halloween, Christmas, and New Year’s together. Activities will include adaptive cycling in the Uinta Mountains, rock climbing, horseback riding, canoeing, waterskiing and painting in a landscape setting. To entertain ourselves we have a murder mystery dinner party, a hypnotist, campfire and drum circle, magic show, a musical performance concert and a star party (astronomy). Our most exciting activity will be our mentor time. We surveyed those who are coming to camp to know their interests and are pairing them up with experts in a field of their interest, who will work on a week-long project with them and then they will exhibit their accomplishment at the talent exhibition. This year’s mentoring subjects include songwriting, filmmaking, remote-controlled fighter gliders, family history, online business, drumming, and makeup art.

EBR: Is there still room for additional campers to apply? Is there a deadline to submit their application?

JH: We still have spots for teenagers 13-17, but they would need to apply ASAP, so we can arrange for their mentor time. They can email ebsurvivors@gmail.com for an application.

EBR: Overall, what do you think is the greatest benefit that those who attend the EB Survivors Camp take away from the whole experience?

JH: The greatest benefit of camp is that it helps us focus on our abilities, to find hope in things we can look forward to in life because of our talents. By setting goals and having mentors who can help us find the tools to accomplish those goals and make them a reachable reality, we can forget our pain and find more reasons to keep our bodies healthy, more reason to go on.

For families interested in learning more about EB Survivors Camp 2010, visit www.ebsurvivors.org or call (801) 319-0160 for additional information.

For many of us, telling others our story about how EB has impacted our lives is not easy. As patients, parents, siblings and spouses, each of us has a unique perspective on what life is like when epidermolysis bullosa is an integral part of it. We’ll talk among ourselves on EB boards and in chat rooms, and build an ongoing dialogue on the EB Resource Facebook page or at the EB Friends Ning, a secure online network linking patients, family and friends impacted by EB. When we do get a chance to meet and interact, such as last month’s Patient Care Conference, we’ll look to each other in earnest for support, ideas, and some form of hope that a new piece of advice we’ll pick up from another family might make a difference. Yet sometimes we may feel fearful of really exposing ourselves to others who know nothing about the daily challenges we face as students, as travelers, as caregivers, all because of EB. Why aren’t we telling this story more often?

We’ll share horror stories with each other about a medication highly recommended that didn’t deliver or medical supplies that came up short and left a loved one in discomfort. But how many people do you honestly think you could walk up to on the street who would know what this condition is that has profoundly changed all of our lives in some way or another?

To others who get the opportunity to peek into our homes in person or through a posted video on YouTube or another site, they see how daily wound care routines and safety precautions take up a large portion of our day. For others looking in, what we do and what we are willing to tolerate as patients and as caregivers may seem difficult to fathom.

That’s why I’m so pleased when I cross paths with a link to a new story about another EB family being introduced in an article, book, TV segment or documentary. It represents another voice in the community getting the word out about what EB is, how we manage to live with the disease every day, what concerns and needs are weighing on the minds of EB families everywhere (such as insurance coverage, medical care costs and research trial progress), and why it’s so unbelievably important to make others aware that there are organizations, medical researchers and doctors committed to this cause.

It certainly takes courage to allow yourself to be so vulnerable and let others peek into your life to learn about you, all about you, high moments, low moments, achievements and obstacles. Each time you tell your story, each time I tell my family’s story, we do something very important: we invite others to learn, to ask questions and to get involved. It can be so comfortable to keep to our own trusted circle of close friends and family but it’s critical for each of us to extend those circles and reach out to our communities, to our children’s schools and to our local media.

Every occasion we use to share our story, we grow our sphere of potential support and we help others grow, as well – to become more educated, more aware of the people around them and their needs, and more compassionate and supportive of their community.

I’ve participated in several media interviews over the years because of my role with DebRA and while promoting my own annual fundraiser, the Butterfly Fashion Show & Luncheon, which I hold every Spring. While I won’t say that it’s ever easy to re-tell my own family’s EB story, I know that when that story is told, there will be at least one more person watching or reading who didn’t know about EB that will now be compelled to look it up online and read more, that may feel inspired enough to ask co-workers about whether or not they’d heard of this disease and that might even feel motivated to donate or find other ways to support an organization like DebRA to help families like mine, yours and thousands of others.

To those of you who have held a neighborhood fundraiser and promoted it, reached out to a local news outlet to share your story, or gotten involved in a community health event to teach others about EB, I say ‘thanks.’

And to those who haven’t, I urge you to make that next move to share your story, whatever small step you’re willing to take. It can seem a little scary as you open up to what feels like the world. But for all other EB families sharing those same challenges, long-term concerns and short-term fears, it’s the most assuring, proactive way to do your part to educate and inspire others to invest in finding a cure and better treatments for EB.

But it starts with that first small step. Maybe you’d like to share that story here first in our warm, supportive EB Resource community. And if I can offer any suggestions for how to make that first move to share your own story in your community, I’m happy to help. I’d love to hear from you. Just email me at leslie.rader@hollisterwoundcare.com.

One of the most prevalent secondary complications of epidermolysis bullosa is infection. As EB patients try to care for wounds and stave off infection, it can be quite common for them to become infected with resistant bacteria, such as menthicillin-resistant Staphylococcus aureus or MRSA. MRSA is contagious, and once contracted, the bacteria can then pose a serious threat to others in the household who interact regularly with the patient.

What exactly is MRSA and how does it spread? According to the Centers for Disease Control and Prevention (CDC), MRSA is a Staph infection that is resistant to treatment by Methicillin (a member of the penicillin antibiotic family) and frequently transmitted via the skin – through direct skin contact or through shared items or surfaces in contact with the infection. MRSA is usually categorized into two types: healthcare-associated and community-associated, the former usually contracted following a hospitalization or surgery and the latter from coming into contact with someone else who has the infection. Since living with epidermolysis bullosa requires frequent wound care and dressings, it can cause these patients to be at much greater risk to cross paths with the dangerous infection.

In DebRA’s Summer 2009 newsletter column, Ask the EB Nurse, nurse educator Geraldine Kelly-Mancuso, RN points out that while MRSA is generally not an airborne bacteria, if it is in the respiratory tract, it can spread through tiny droplets on the skin or in the nose. This can then spread to others who come into physical contact with the person with EB who is carrying the bacteria or “colonized” with MRSA, as it is usually called.

The CDC offers its list of the 5C’s that most impact the spread of MRSA. These are: crowding; contact with skin on a frequent basis; compromised skin, such as cuts, wounds or abrasions; contaminated surfaces or items (such as sheets, towels, bandages, etc.); and cleanliness (or lack of good hygiene).

MRSA infections typically appear as swollen, red or pus-filled skin infections often found near areas of skin trauma or locations usually covered by hair and can be treated with antibiotics and drainage of the infection, where necessary.

In her column, Mancuso suggests several ways for a household to prevent the spread of MRSA. These include:

• Proper washing with soap and water, especially of the hands, on a regular basis.
• Restricting wound care to one location and keeping that area clean after each dressing change.
• Using bleach to clean toys or sports equipment that may be shared among siblings or neighboring kids who visit.
• Taking showers instead of baths to minimize skin contact with commonly shared surfaces.
• Keeping wounds covered completely to prevent possible skin contact with others.
• Washing clothes before wearing them again.
• Using separate towels for everybody including washcloths and hand towels, typically shared by all bathroom guests.
• Washing of all sheets and towels being used on a frequent basis.

Click here for additional information about MRSA available on the CDC website.

For individuals and families facing epidermolysis bullosa every day, the support of others is critical to stay positive and manage stress. Don’t be afraid to turn to other families, health care professionals and other sources for helpful care pointers, vendor recommendations, a strong shoulder of support and a sympathetic ear.

If you attend or coordinate a particular support group in your area, we’d love to hear about it so we can share with others in the EB Resource community. Please send me your name and contact information, along with any details about the group you can offer, including coordinator contact info, times and days of meetings and any details about the group make-up or focus to leslie.rader@hollisterwoundcare.com. Thanks in advance!

If you are an EB patient, parent or caregiver seeking additional support, keep in mind that typically a list of general guidelines may apply. When support groups are formed or new people join, usually the group’s coordinator will articulate the overall principles of the group, guidelines for interaction and communication and expectations of members.

Here are some of the more common guidelines that members of many support groups may be asked to follow by a support group’s facilitator.

• Respect for confidentiality. Participants in a conversation must feel comfortable sharing and know that whatever information they are divulging will be kept within the confines of that exclusive circle.
• Respect for the group’s purpose. While a support group may address several issues as they relate to an EB family, it is important for the group to stay focused and on topic without straying to other areas of discussion out of respect for each participant’s time and willingness to attend for the agreed-upon purpose. Most support groups have a main coordinator or moderator of the discussion who can direct a conversation back on course.
• Willingness to share. It may take a greater length of time for some attendees to open up to the group than for others, but to be a fully vested participant in the support group, each member should be willing to share personal feelings, stories and questions with the rest of the group in an effort to address those issues that may be causing them particular stress or hardship. By doing so, that member may indirectly help another participant in the group who might be experiencing the same thing though it may not have been voiced.
• Commitment to honesty. Members of a support group must be able to trust that what others are saying is truthful, whether it is a personal story or reflection being relayed or feedback being offered. Candor should be respectful of others’ sensitivities but is necessary to carry forth a meaningful discussion on any topic that is going to help someone, offer support or provide real solutions.
• Willingness to listen. Just as participants are expected to share with others at some point in a support group, they also are expected to let others talk and serve as an active listener and objective sounding board. Avoid chatting with individuals next to you while a group discussion is taking place. Instead, listen closely to what the participant currently addressing the group is really asking for and do your part as a fellow member. Often we can learn just as much about ourselves as about others when we listen to what others are telling us.
• Unconditional support. Don’t judge, openly criticize or be confrontational. The purpose of a support group is to offer unconditional support whether it’s a place to talk freely without being judged, a place to be heard or a source for ideas or much-needed feedback. Withhold any theories about motives behind actions and reserve personal opinions about someone else’s consequences. Just be there: to lend a hand, an ear or a suggestion.