A Little Birdie Told Us

We always learn so much from the members of the EB Resource Facebook community. Recently, we listened in to hear what folks were saying and wanted to share some highlights. And if you haven’t had an opportunity to visit lately, we invite you to do so. It’s a strong, smart and caring group of people who only want to help educate and support one another. We hope you’ll stop in and say hello.

** Please note that comments and recommendations are offered by individual members of the EB Resource Facebook community and are not necessarily recommended or endorsed by EB Resource. Individuals should always consult a physician before making any changes to their wound care program or other care regimens.

  • Recently, we encouraged members of the community to reach out to us if they would like to tell their own EB story. We found out that one member Derra Nicole Sabo had already taken a very big step to do just that. “I have written a book with my family about what it’s like living with EB. It’s called EB…Some Call It Epidermolysis Bullosa, I Call It Extraordinarily Beautiful,” she writes. Thanks for sharing, Derra!
     
  • In April, we asked members what they felt was the most misunderstood thing about living with EB and received a lot of feedback. A few members especially chimed in agreement with member Elizabeth Schwartz. “It’s no big deal, they’ll grow out of it, a change in diet would help or a new lotion. I mostly hate when people, especially family, don’t acknowledge the difficulty or special needs my kids have,” she says. Jessica Tilldal agrees and notes, “People try to be nice by saying ‘hopefully it’ll get better when she grows up’ when in fact it might be quite the opposite…frustrating!” How would you answer that question? Feel free to share your own thoughts.
     
  • We also wanted to pass along to others some recommendations for EB-friendly clothing brands worth a peek online or in person, and as usual, the community didn’t disappoint with helpful suggestions. Jamie Grossman Silver shared that she had made a recent find: “I just discovered a brand called City Threads. Incredibly soft and seams are very gentle.” Josie Tripp offered her own suggestion – “Carters and kicky pants” – and Teri Bienvenu noted some places that have worked for her family: “Gap and Old Navy fleece have always worked for us. Target and A Children’s Place have tag-free cotton shirts and we do crocs for shoes.” Kathryn Foster recommended “New Balance Shoes. They come in extra wide widths to accommodate bandages” as well as Hanes tag-less boxer briefs. If you missed our original question posed, do you have any suggestions to offer?
     
  • So many of you told us how much you enjoyed the recent Q&A with the charming Stevie Hislop in a two-part blog as she shared honest and open insight as a young adult living with EB. We’re happy to share that we’ll be featuring another wonderful Q&A with a pivotal person in the community who’s done much to support our families, so look for that next week. And when we did reach out and ask you for suggestions of future people to profile, you shared your suggestions and we took notice and hope to feature more EB advocates and supporters in future blogs. So stay tuned for next week and in the months to come.
     
  • We also welcome it when members want to share news about an upcoming campaign or fundraiser. For example, in April, Jeanne Appleton announced to our community that the Scott Ward Schofield Memorial Fund was holding a Facebook Awareness Day online event for the charity on May 18. Similarly, Amy Tunmire Wehr shared news of an online fundraiser for Save Jax that ran April 4-27 to benefit young Jackson Baldwin of Youngstown, NY. We like to think of our community as a powerful, loving circle of friends, and what do you do in the company of friends? You share, you encourage and you support. If you have an announcement about an upcoming event that all of us in the EB Resource community can get behind and spread the word about in our own circles, please let us know on Facebook or email me directly at leslie.rader@hollisterwoundcare.com.

Kudos to These EB Champions

As you already know, one of the greatest challenges for the EB community is getting the word out about epidermolysis bullosa, so when well-known celebrities or a group of people committed to the cause step in to make something happen, we think it’s a beautiful thing. Here is a great trio that has done just that.

  • Patti Hansen
    Remember ’70s supermodel and wife to Rolling Stones rock legend Keith Richards? We were so excited to hear that Patti Hansen’s recently unveiled talent of making designer handbags for Hung on U was attracting Hollywood attention. But we were ecstatic to learn she was using all of the buzz to partner with EBMRF to raise funds for EB medical research by donating 15 celebrity-customized Hung on U bags for an online auction hosted by Charity Buzz. We say that embracing your style and fashion while supporting a great cause is a win-win. Thank you, Patti!
  • The Butterfly Fund
    This organization, led by founder and executive director Laurie Sterner, initially began with the purpose of raising awareness about EB and the need for support for those who suffer from the disease. Since then, the organization has grown to include support for children diagnosed with any serious life-altering disease or condition. For all Butterfly Fund events, all proceeds go directly to those families being supported, with no paid employees among the group’s team of supporters and volunteers. With food, housing, clothing, care or financial assistance, EB families are helped directly through The Butterfly Fund. This December, the group hosts its invitation-only gala, the 3rd Annual Butterfly Ball in Sonoma, CA. (For details, visit www.sonomabutterflyball.com.) We applaud The Butterfly Fund for all that it does to continue raising awareness and funding for EB families.
     
  • Delta Tau Delta Fraternity at Southeastern Louisiana University
    When we learned in late September about a fraternity chapter in Louisiana that had embraced the cause of EB Awareness as one of its missions, we knew we had EB champions in our midst! Fraternity president Brandon Colletti and his brother members of the Delta Tau Delta Fraternity of Southeastern Louisiana University launched a fierce campaign to raise funds and public support for the Roth family of Ponchatoula, LA, and specifically two-year-old Tripp, who has EB. Once the fraternity brothers learned of the expensive day-to-day costs for EB families, they set out to promote their popular fundraisers, known as Delts-do-a-Thousand, with not one, but two campaigns to raise support for Tripp and his family. The group led a three-day fundraiser by shaking cans and riding an exercise bike to collect spare change—in the spirit that every little bit of help matters. And we say, yes, it does. Kudos, Delta Tau Delta, for reminding us!
     

Sources:
“Patti Hansen’s Hung on U Line Debuts at Barneys New York” (LA Times)
Hung on U
The Butterfly Fund
“Fraternity Helps Child with Rare Disease” (The Lion’s Roar, Southeastern Louisiana University)

Related Posts:
EB Champions, We Salute You!
Celebrating Moms Making a Difference
We Appreciate These EB Champions

Stress Management for Caregivers

*The following suggestions are provided as a courtesy to the EB Resource community for informational purposes only. The suggestions referenced are not intended to be a substitute for the advice of your personal health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your health care provider.

 

For many of us in households where managing EB is part of our daily routine, serving as a caregiver or support resource is just an expected role we take on. As we become more and more involved in our caregiving responsibilities, it can be quite common for those serving in these roles to neglect their own health and wellness needs or ignore high stress level indicators.

The American Stress Institute acknowledges that there is no single agreed upon definition of stress. Often its definition can be subjective. However, some of the most commonly accepted descriptions of stress define it as “physical, mental or emotional strain or tension” whereby “demands exceed the personal and social resources the individual is able to mobilize.”

The real key to the last part of that definition is that demands exceed resources. As caregivers, we may have no control over weight of those demands, so it’s essential to build up a foundation of personal and social resources to be prepared for the toll these stresses– in whatever form, duration or size – can take and to avoid caregiver burnout.

Here are some helpful strategies to help build these stress management resources.

  • Commit yourself to sleep. Be insistent that you get a proper night’s sleep. The Harvard Medical School Division of Sleep Medicine reports that there’s a close connection between sleep and mood, and that poor or inadequate sleep can lead to irritability and stress, whereas what was deemed a “healthy sleep” could enhance well-being.
  • Keep moving wherever and however you can. The Mayo Clinic suggests finding even a small window of time most days of the week for some kind of physical exercise – a morning swim, a mid-day walk, an evening bike ride – which can be good for both a healthy body and mind, as well as serve as a natural de-stressor.
  • Eat healthful foods. According to the Mayo Clinic, making sure you include plenty of fruits and vegetables in your diet can help you get the recommended daily allowance of vitamins and minerals for you to maintain the energy necessary to keep up with the typically demanding schedule of a caregiver. The National Institutes of Health also suggests following a low-sodium diet to reduce the risk of high blood pressure and hypertension, which can accompany high-pressure and high-stress roles like caregiving.
  • Stay social. Keep in touch with family and friends and don’t isolate yourself. The Mayo Clinic notes that sometimes it can be helpful to make arrangements to meet up with others outside of the home. Consider teaming up with a walking buddy to combine both exercise and socializing if time is truly limited.
  • Ask for help and accept it graciously. Some of us may have inherited certain beliefs that we must do everything on our own. But when caring for a loved one or good friend with an illness like epidermolysis Bullosa, it’s important to recognize that we may not have all of the resources or tools necessary to go it alone. Reach out to others, suggests the Mayo Clinic – those who can offer advice, outright help, or support in some other form.
  • Find a support resource to tap into regularly. It can be a formal support group or even an informal in-person or online gathering of individuals who may be facing similar challenges as caregivers, though it may not be specifically tied to EB. The Mayo Clinic points out that support groups can be a great place to make new friends. Check with local hospitals and community centers for any formal meet-ups or upcoming workshops that could be beneficial. Opportunities to share and learn from others can provide a much needed stress outlet.

Sources:

Mayo Clinic, Caregiver Stress: Tips for Taking Care of Yourself

The American Institute of Stress, Definition of Stress

National Institutes of Health, Hypertension

Harvard Medical School, Sleep & Mood

Related Posts:

Free EB Information Resources

The Facts about Depression

Identify and Manage Caregiver Burnout

A Closer Look at Rare Disease Day

Today marks an international event first established in Europe in 2008 by the European Rare Diseases Organization (EURORDIS) and now embraced by countries all over the world, including the U.S. and the National Organization for Rare Disorders (NORD) as Rare Disease Day, observed each year on the last day of February. Its significance to EB families is enormous as it collectively unites a number of groups – patients and their families, patient advocacy organizations, the medical community, scientific community and educators and more – to draw greater attention to some of the world’s rarest diseases as a matter of significant public health interest.

In 2009, the U.S. began working closely with EURORDIS as part of a strategic partnership to combine forces across rare diseases on a number of initiatives, including promotion of Rare Disease Day activities and the development of an online rare disease blog archive. Click here to check out this informative resource.

A “rare disease” is defined in the U.S. as one that affects fewer than 200,000 people, a definition originating from the Orphan Drug Act of 1983. According to NORD, there are about 7,000 rare diseases in existence impacting a total of around 30 million Americans!

On this day, February 28, 2011, hundreds of patient organizations and their partners will be hosting events at national and regional levels to raise awareness about various rare diseases and the people whose lives are directly or indirectly impacted by them.

Each year, there is a theme for Rare Disease Day. This year it’s “Rare But Equal,” which focuses on many of the inequalities that impact the resources and attention rare diseases often receive. Since this is only the third year of observance in the U.S., NORD’s major objectives in 2011 are to continue building awareness of the observance using such tools as social media, traditional media and stories and events generated from the patient advocacy groups themselves. The organization also plans to develop a Rare Disease Physician database which should prove to be invaluable to such groups as EB families who may struggle to locate the right resources for support or medical care.

Are you aware of any Rare Disease Day events going on in your state? Twenty-seven states have issued a formal proclamation of Rare Disease Day in their respective states.

One easy way that you can get involved is right from your computer. Lundbeck Inc. is donating $1.00 for each individual click on its Raise Your Hand awareness banner ad campaign (up to $10,000) to spread the word about Rare Disease Day. Both Rare Disease Day USA and EB Friends have the Raise Your Hand banner ad on their websites’ home pages (you don’t even have to be an EB Friends member or log in to click!) Money raised will be contributed to a general research fund managed by NORD. In 2010, a similar campaign led to a $10,000 donation for NORD.

Sources:

Rare Disease Day USA

European Rare Diseases Organization

National Organization for Rare Disorders

Related Posts:

Free EB Information Resources

Resolve to Speak Up for EB Families

Fast Facts about EB

Using Restore® and Restore Lite Foam Dressings featuring TRIACT Advanced® Technology

*Seek advice from your physician regarding to your condition

Occasionally, we like to offer some info behind a few of our wound dressings for those who might be just starting to use them or contemplating use of them—such as when they’re best used and important things you should know when using. As always, if you have any questions about this product or use of it, don’t hesitate to contact me directly, Leslie Rader, EB Coordinator, at 1-888-EBAID4U or by email at leslie.rader@hollisterwoundcare.com. I’m happy to help however I can.

This week, we’re spotlighting the most recent additions to our product line launched last spring at the Symposium on Advanced Wound Care in Orlando: our Restore and Restore Lite Foam Dressings.

Some helpful information for you to know:

  • Dressings are designed using TRIACT ADVANCED Technology.
    Like many of Hollister’s other products, the Restore and Restore Lite foam dressing are developed with TRIACT ADVANCED Technology, made of a lipido-colloid matrix that forms a gel when exudate is present, a gel that can help prevent sticking of the dressing to the wound bed. For patients, this means that dressing removal is virtually pain-free.
  • The Restore and Restore Lite Foam Dressings featuring TRIACT Advanced Technology offer a moist wound interface.
    With a semi-permeable backing, these dressings offer a high moisture transmission rate that helps reduce maceration and preserve wound margins. Use of standard versus lite will most likely depend upon the exudate level of the wound being dressed.

  • Dressings feature a foam padding that promotes vertical wicking.
    Whether it’s the standard dressing, which features a super-absorbent foam pad, or the lite version with its thinner foam pad, the Restore foam dressing line enables users to contain the exudate through vertical wicking and protect the delicate, periwound skin from maceration.
  • Restore and Restore Lite Foam Dressings featuring TRIACT Advanced Technology offer adaptability and ease of use.
    With the properties of TRIACT ADVANCED Technology, both wound dressings offer increased conformability and a gentle micro-adherence that allows users to apply the dressing across a variety of locations on the body as needed. This ease of application and removal also lends itself to one-handed application.
  • These products have specific indications for use.

Restore Foam Dressing is available with and without a border and is indicated in the treatment of moderate to heavily exuding wounds. Restore Lite Foam Dressing is available without a border and is indicated in the treatment of light to moderately exuding wounds. Restore Foam Dressing Without Border and Restore Lite Foam Dressing are recommended in the treatment of wounds in which the surrounding skin is fragile, friable or damaged. Restore and Restore Lite Foam Dressings are suitable for use under compression bandages/wraps due to the ability of the dressing to retain exudates.

Sources:

Hollister Wound Care, Restore Foam Dressings

Hollister Wound Care, Restore Lite Foam Dressings

The Wound Institute

Related Posts:

What to Know When Using Restore DUO Dressings

Using Restore Calcium Alginate Dressings

What to Know When Using Restore Foam Dressings

What to Know When Using Restore Contact Layer Dressings with Silver

What to Know When Using Restore Contact Layer Dressings

We “Heart” These EB Champions

Valentine’s Day may have come and gone, but we thought it was the perfect time to celebrate what some of the voices in the EB community are doing to speak up and be heard at a local, national, or global level. We love what these wonderful EB champions are doing to try to make a difference in the lives of patients and their families by getting the word out about a disease that many in the medical and scientific communities are still not talking about. Let them inspire you to determine what you can do to join in with your voice.

  • PUCK, Pioneering Unique Cures for Kids
    After nine-month-old daughter Sara, who had been scheduled to take part in a University of Minnesota bone marrow transplant research trial, died from complications of the disease before participating, her parents Jay and Lonni Moreland continued to stay involved in the study. Upon learning that five of the study’s seven participants were showing signs of improvement, the couple relocated from California to Woodbury, MN to be closer to the University’s research team and launched the foundation PUCK, Pioneering Unique Cures for Kids, to benefit disease research for EB and other rare diseases.
  • Tyler Jones
    Last fall, Tyler Jones, a 14-year-old from Murray, KY born with EB, was inspired by National EB Awareness Week to create his own opportunity to educate others about epidermolysis bullosa. He and his mom, Rachelle held a campaign to sell purple EB bracelets to raise money for DebRA at the Nov. 5 Murray High School football playoff game and shared information about EB with others. Tyler’s just one example of some of our younger voices in the EB community speaking up to make a difference.
  • Timothy Ringgold
    If you’ve been reading about EB for some time, you’ve most likely come across Timothy Ringgold’s name. Author of Bella’s Blessings and father to Annabella, its inspiration who died just shy of seventeen months old following complications from a bone marrow transplant as part of the same University of Minnesota research that inspired PUCK, Ringgold has been an active speaker and fundraiser in the EB community for a while. Through his regular blogs at the Bella’s Blessings daily blog and a Team Bella video series posted on YouTube, the mourning father has been very open and candid in sharing his feelings about the loss of his daughter and has channeled that grief into encouragement of others to raise funding for EB research and to share their stories.

 

Sources:

“Woodbury Family Hopeful about Disease Research” (Woodbury Bulletin)

“Local Youth Inspiration to Those Around Him” (Murray Ledger & Times)

Timothy Ringgold YouTube Channel

Bella’s Blessings

Related Posts:

Resolve to Speak Up for EB Families

Thankful for These EB Voices

More EB Champions Worth Celebrating

Celebrating EB Family Advocates & Supporters

A Q&A with EB Friends Creator, Chris “Pez” Matthai, Part II

This week, we continue our Q & A with EB Friends co-creator “Pez” Matthai, who shares thoughts about last fall’s My Dunktank.com “I’ll Do Anything for EB Awareness” Challenge in Central Park and what messages he feels needs to get out about EB.

EB Resource (EBR): Many of our readers in the EB Resource community are personally touched by the skin disease, but as they reach out more and more to their workplaces, neighborhoods, schools and towns to educate others, we’ve begun to see greater interest in our site from those who aren’t directly affected. Are you finding that’s the case in the EB Friends community as well?

Chris “Pez” Matthai (Chris): Well, there is no denying that 2010 was the biggest year for spreading awareness ever. I was absolutely amazed at some of the creativity that went into fund AND awareness raising. Some of my favorites were EB Resource’s Twitter campaign and Alexis Sharp’s “Refuse to Settle for Anything less than Butterflies” campaign. She posted on Facebook that she wanted everyone to draw a butterfly on their hand or arm during EB Awareness Week. The idea was that people would see it and ask about it. She took the concept of awareness bracelets and ribbons to a whole new level. You know what? I tried it and it worked! It worked in New York City where people are jaded. They’ve seen everything, and even things they haven’t seen rarely faze them. I had several people ask me what the butterfly was for, and I briefly explained as I passed out a brochure which would explain even more.

I see more people joining our non-private resources such as our Twitter and our Facebook page. But, as far as people not involved directly joining EB Friends I find it to be as slow as ever. This could actually be a good indicator of the ugly truth, too. We really need to find ways to get more people involved and keep them involved. With Facebook LIKE and SHARE buttons on almost every website we see, it can give us a false impression on how things really are. How many times have you clicked a LIKE or SHARE button on something and never gave it another thought a week later? The analytic results will show that a few thousand people clicked the LIKE button and we get excited about that. It is a false indicator of how many people are really getting involved.

Since EB Friends is private, most of our members are directly involved with EB. We have many who are not, but their interest wanes quickly. Seriously, only a handful of our members not directly involved bother coming in after a while. I know this isn’t what everyone wants to hear but, it is reality. We really need more awareness and involvement. Yes, the numbers are growing, but way too slowly. We need more champions like Laurie Sterner and her group running The Butterfly Fund. I know we can do it. I always say that our EB Community may be small, but we are powerful.

EBR: Earlier this year, you launched a unique and creative way to raise funds for EB causes. You’ve said on EB Friends that the purpose of the site and your work hasn’t been about fundraising. What led you to create such a fun and memorable event in Central Park?

Chris: Oh boy! How embarrassing! (laughs) You are referring to the “I’ll Do Anything For EB Awareness” thing I did last October for EB Awareness Week. I didn’t mean to say that I don’t get involved in fundraising. As you can see, that’s not true. EBF is not aimed at fundraising. We certainly promote it and encourage people to do things to raise money for organizations and families, but the actual social network isn’t designed for that purpose. We want our members to read about how others are doing things and we hope it inspires more fundraising. EBF, at this time, has not figured out a way to ask for donations from the very same people who need help. We also support many different organizations there, so it would be very difficult to choose just one or two to raise money for. There are many ways a website can raise money just by existing, but we would have to decide on a particular organization, and that isn’t in our best interest. That would only create rifts, and we are enjoying the harmony we have with the different organizations we support. Our main focus needs to stay on providing a place where EB patients, their families, and friends can interact safely online.

I usually do my donating or fundraising in a more private manner. Every now and then I get a burst of creativity or see something that suits my personality and I put everything I have into it. I enjoyed the PEZ thing I mentioned earlier very much. We raised a few thousand dollars with that one and the money went towards DebRA America and The EBMRF. Mostly, that project was geared towards awareness and it did very well in that arena.

A friend showed me the My Dunktank website and reminded me of something I often say. “I’ll do anything for EB Awareness” are the words she was daring me to live up to. I had no idea what I would end up doing. I just knew it would be public and in New York City someplace. In the final days before the daring process was ending, a dare for me to dress up like a clown and entertain people on the streets of NY was far in the lead. I knew a clown in New York would be overlooked in New York City. I started a campaign to bring the Teapot Dare to the winners circle. I elaborated on the Teapot Dare stating that if it won I wouldn’t just perform it ten times in Central Park, but that I would perform it in ten different locations throughout Manhattan every hour, on the hour. We had much success that day…

EBR: If you could broadcast a message to the world about EB and the people living with this disease, what would you tell them? What messages aren’t getting out to the public?

Chris: Oh man, there are so many. Personally, as I have gained more EB patients as friends, I wish the media and an alarming percentage of EB families would stop calling EB a childhood disorder. Referring to everyone with EB as Butterfly Children or EB Kids is insulting to all our Butterfly Adults. My friend Julieann put it best in an email she sent me last year. She was telling me what she would say if offered this opportunity you are giving me right now. She said, and I’m paraphrasing here, that parents should not focus on the harsh reality that many EB patients do indeed lose their lives at a young age. They should focus in on living and make those plans for a future. She said that when you call it a childhood disease, you need to remember your child may very well become that man or woman you have dreamed for, and now what? You forgot to teach them about independence. You forgot that you may need to find a whole new set of doctors when their pediatrician specialists say they can’t touch adult patients. You forgot that they might just drive YOU to their college graduation in their OWN car. I have a huge soft spot for the children with EB. How can I not? But, I also feel for the often forgotten EB adults.

Another thing I would like to say to all your readers who have children with EB is that there needs to be more interaction between you and the adults with EB. I have yet to meet an adult who isn’t ready to share their experiences. You’ll also find the most compassion and support from the adults because they know firsthand what a horror EB can be. To all your readers who can afford it, please help the United Survivors With EB Organization (USeb). USeb is doing wonderful things in helping EB patients become self-reliant. The adults with EB have so many talents, too. Each one of them can offer advice and share knowledge about an endless array of non-EB related fun and real world skills. We have photographers, painters, writers, musicians and even a couple opera singers. These are just some of the talents these people possess. Professionally, I know of nurses, real estate agents, teachers and even carpenters who have EB. The list of job titles worn by adult EB patients is staggering in our EB community.

I know my words sound harsh and possibly insensitive to those with the severest forms of EB. I really don’t mean them to be. My heart bursts every time I hear of a passing or a person struggling with the deformities caused by severe EB. However, after working on EBF for four years, I have seen the inspiring stories too. We need to remember that just because our EB adults are out there in the world being productive, they are struggling as much as the children, and in many cases they are struggling more. These people need our friendship and support, too.

Sources:

EB Friends

Related Posts:

A Q&A with EB Friends Creator, Chris Pez Matthei, Part I

Learning from Each Other Part I

Learning from Each Other Part II

A Q&A with EB Friends Creator, Chris Pez Matthai, Part I

We regularly celebrate the work of folks in various roles who are making a difference in the EB community, including researchers, educators, fundraiser creators and those with a special knack for connecting – people to resources, people to answers, and people to each other. One such person we’ve mentioned before is Chris “Pez” Matthai, co-creator of the web site EB Friends. We reached out to him to get to the heart of what he’s doing and why (and inquire about that intriguing nickname, too).

Matthai launched EB Friends in March of 2007 to provide an online source of support for people with EB and their families to connect with others with similar experiences, and to offer a valuable interactive forum to share information and resources. We’ll be running a portion of the Q&A this week and next week.

EB Resource (EBR): We see you out on EB Friends and our own site regularly, but don’t know a lot about you personally. We think other readers might like to know more, too. Where do you hail from? Are you from a large family? What do you do professionally?

Chris “Pez” Matthai (Chris): I grew up in New York, Long Island specifically. I have a small family. My brother, his wife, my mother and her husband are all on Long Island. I recently relocated to Utah. I am primarily a carpenter. Anyone need a carpenter in Utah? (laughs) This winter, I am beginning the process to do all it takes to become a licensed contractor here in Utah and get certified to be an IT consultant.

EBR: And when the heck did the “PEZ” obsession develop?

Chris: I’m obsessed with PEZ? Who told you that? Yes, I guess I am a bit. I have a few hobbies and collecting PEZ dispensers I guess is the quirky one which stands out especially in the EB Community. I’ve always had PEZ growing up, and in the late 1980’s I read an article in a magazine about how some of them were worth a lot of money. I had a few that were pictured in that article. I decided to start collecting them and now have somewhere around 1,000 different ones. I have used them as a tool to raise awareness and funds for EB research after I met a woman online in 2005. Lori "Lacee" Ryan shared the hobby and is an adult Junctional EB patient. Lori said the hobby was a great distraction for the hard days EB brings her. We became good friends, and she taught me a lot about EB in my early days of fighting against EB.

There are a few kids with EB who now have their own collections. Some of these collections are growing quite large. I look forward to seeing if they carry on with the hobby as they become teenagers and maybe even meet each other through trading and discussing them online. I actually have another fund/awareness raiser in mind for 2011 which involves PEZ. My favorite moment in the hobby occurred during a project two friends in the hobby and I were conducting for EB. PEZ Candy Inc. actually wrote to us, expressed their excitement with what we were doing with their product and invited us to their factory in Connecticut. This meeting led to another visit, which was called The Butterfly Tour. The Butterfly Tour took place in May of 2006. PEZ Candy Inc. had me invite a few EB Patients and their families to tour the factory. I selected a group that represented all ages and types of EB. The Executive Director of DebRA America back then, Suzanne Cohen, joined us too. It was a special day for all of us; the company too. We felt like we were the winners in the Willy Wonka story since PEZ Candy Inc. does not open its doors to the public very often. My collecting has slowed down a bit these days, and I am certainly not obsessed; however, my love for the company and their product is as strong as ever.

EBR: You’ve noted before that you do not have EB personally or have someone in your family with EB, though you have built a number of friendships with people who do. What is it about this disease that has affected you so much where it seems almost like a personal mission of yours to bring greater awareness and support individuals and families impacted by it? Is that a fair statement?

Chris: That certainly is a fair statement. After learning about EB, I wanted to do something. There isn’t a single person who hasn’t experienced a blister from new shoes or hard work. As a carpenter I have seen healthy grown men wince in pain from a broken blister the size of a pea on their hands. I myself have been close to screaming and cursing from a blister. I was appalled when I learned that EB existed.

Grace Peshkur was the first baby I met with EB. Her grandmother worked with my mother. As I learned more and attended local events, I met the families. I hope I can express my feelings properly here and pardon me if I get emotional. My drive is based on compassion. However, it has now gone way beyond that. I am always amazed at how positive these families stay even when they are shouting, cursing and crying. There is always some glimmer of a smile on their faces. Usually the faces of the EB Community have way more than a glimmer of a smile too. I saw, for the most part, how supportive they were of each other. I learned more about life and myself through my online interactions with these families. By the end of 2007, I was emotionally involved to a point where there was no turning back.

I’ve questioned my way of "helping" often and still do. I can be clumsy at times, which can translate into callousness online. Just recently I was told by someone I don’t see the wounds anymore and forgot why I am here. The very same week someone else told me I treat the community as if they are only EB patients and not humans, two opposites of the spectrum, and both comments cut deep. I really hope most people see me some place in the middle. I never want EB to be the main focus of my friendships, yet I also need to be very vocal about EB in order to do what I do. You see, we the people who don’t live with EB and are very involved are outsiders and will always be outsiders. When dealing with something as brutal as EB, people will always question your motives. Most people dealing with EB would run the other direction if they could. I am running towards it. As involved as I am, I am bound to say something wrong at times. I’m clumsy like that…In spite of my clumsiness, I seem to have endeared myself enough that I am trusted to act as a sort of hub for the families to connect with one another so that sharing things as basic as a roll of gauze can actually occur. EB is nasty and unpredictable. It creates loneliness and depression. It takes all of your time. I vowed a few years ago that for every hour an EB family spends on dressing changes, I would match in helping them find each other and make it easier to locate the answers to some of the questions they have.

EBR: You explain on the EB Friends site the story behind creating it, but I’m curious as someone looking at it nearly four years later – what are your thoughts on how the site has evolved? Has it surpassed your original vision?

Chris: HAH! Our crazy friend known as The EB Friends Social Network! I guess you are referring to the last interview I did in 2009, which explains its origins and my friendship with its co-creator Cristina Perez. The site is forever evolving and while it has surpassed many of my expectations, I feel I have come up short in many ways too. I am amazed at how the membership keeps growing and growing.

Boy, this is a tough question! I can’t figure out how to applaud the place without sounding like I am applauding myself. I should make it very clear that most people out there think I am EB Friends. That is so far from the truth. EBF is a collaboration of its members. They are the people who make it what it is. The members are the ones who recognize it was built on a solid ground of love, and they are the ones who keep the foundation sturdy while building upon it. As far as the technical aspect, I work with a team of people. This team has changed over the years since we all volunteer. Most everyone who has ever been on the team either has EB or has EB in their home. As different moments in our lives occur we drop in and out. Sara Denslaw has been there with us since the beginning and really stepped up to the plate when we lost Cristina. She and I agree on most of the issues that come up, and when we don’t agree she is always right. Don’t let her know I said that! Seriously, as I mentioned earlier, I am clumsy in this community. Sara has kept me in line more times than I can count. The whole team has, really. We only build what we see is needed. We take every suggestion, praise and criticism to heart and try to create something that will grow just by the people using it.

EBF has become an important resource to so many people out there. I never in my wildest dreams thought I would be so involved with something like this. There are times when things are quiet for a while, but our analytic reports show a steady stream of people checking in. Whether they are looking up old discussions for information or looking to see if they can lend support to a fellow EBF member, the people are there. This makes me very happy.

I know there are ways to improve the network, too. This is the most frustrating part. We are a small team with lives. There are many things we want to build onto the network. It takes time to build these things.

Check back soon for Part Two of our interview!

Sources:

EB Friends

Related Posts:

Resolve to Speak Up for EB Families

More EB Champions Worth Celebrating

Life As an Adult with EB

We’re always pleased to see people sharing their stories. It seems since we launched this forum back in Fall 2009, there are so many more family blog sites, editorials, uploaded videos and articles about EB patients and their families. We hope that in some small way it may be due to the encouragement of forums like ours; our colleagues at EB Friends and groups like DebRA, EBMRF; and others who are urging families and friends to help spread the word by telling their stories.

One frequently asked question I get as a New Family Advocate is “what will life be like for my child when he or she is an adult living with EB?” Often that question is preceded with the even more difficult question, “will my child live to become an adult with EB?” As all of us who are EB parents know, particularly those of us who have lost a child to the disease, we simply cannot answer that tougher question and be 100% certain. Research continues and shows promising progress every day that doctors and medical specialists will develop some kind of an improved treatment or perhaps even a cure for EB. And it is difficult for me to answer the first question, too, since I cannot speak from personal experience as a patient or as a parent of an adult living with EB, but there are a number of people who can, some of whom we’ve actually featured here in our blog.

For insight on life as an adult living day-to-day with EB, we can turn to a number of brave resources online, in film and in publications who have shared what the experience is like, daily physical and emotional tests, personal coping strategies, the impact of EB on relationships formed, and steps taken regarding career and family life. While not every story may be uplifting, each one is honest and sheds light on the types of challenges that may lie ahead and what resources and support will be needed to overcome them.

  • In late 2010, DebRA revamped its website and added a new feature to include personal stories from both those living with EB and from those living with family members with the disease. Some adults who’ve taken part and share inspiring stories include 33-year-old Monique McKissick and 43-year-old Bruce Gunn, both of whom have forms of the disease but who’ve been able to overcome the disease in such a way that has allowed them to experience those things they’ve always wanted to do – be it work, school, married life, and so on. We look forward to reading even more inspiring stories in this new DebRA section of the website.
  • Some of the more known adults with EB who have shared their stories have been able to make a significant impact on raising funds for their respective EB-focused charities, including one of the most recognized adults with EB, Jonny Kennedy, the young British man featured in the pivotal documentary The Boy Whose Skin Fell Off. The film is considered by many to be the first real glimpse at life with EB, and its attention has helped raise £500,000 for DebRA U.K. since its first airing on British television. Kennedy passed away in 2003 at the age of 36, but his legacy is still felt both through the documentary and through his own words and audio clips posted at his foundation website.
  • Amy O’Neill, an adult in her ‘40s with EB, has shared her thoughts for numerous articles about EB for many years as well as through videos captured and shared at her website, and inspired others to learn more about the disease through her strength and determination. Recently, we learned that she would be undergoing a surgery to amputate one of her legs following the discovery of cancerous tumors. We send positive thoughts her way as she has been a source of inspiration to many people living with EB.
  • United Survivors with Epidermolysis Bullosa co-founder Jamie Hartley took her own experience living with EB and used it to fuel the development of an opportunity for those with EB of all ages to take part in the same kind of outdoor learning experiences and interactive opportunities that other kids and adults may take for granted. She and her husband launched annual EB Survivor camping events. Click here to learn more about the story behind this unique program. And you can also check out our talk with Jamie back in early summer 2009 as she was preparing for her organization’s second camp experience.
  • At the EB Resource blog, we ourselves have featured the personal stories of several men and women who wanted to talk about their own experiences with EB, sharing insight about making that transition from childhood to adulthood as someone living with EB. Thank you, Julieann Morabito and Jennifer Harbuck, for talking with us last year to shed light on a subject that many wish to know more about. This year, we hope to introduce the stories of many more adults who wish to share their own perspectives on life with EB right here at the blog.

Sources:
DebRA of America
United Survivors with Epidermolysis Bullosa
Jonny Kennedy, Wikipedia
EB Resource

Related Posts:
Learning from Each Other, Part 1
Learning from Each Other, Part 2
Sharing Our EB Family’s Story: A Mother Reflects on Pregnancy & EB

Weathering Winter with EB

Winter is definitely here, and in some parts of the country, there’s no escaping the inches and inches of snow, or the chill and dampness in the air. Like every season, this one has pluses and minuses for EB families trying to manage the skin condition through these changes in temperature and precipitation. Here are just a few reminders about how to be prepared to meet the challenges through apparel choices and other winter-proofing strategies.

  • Remember to layer.
    It’s always best to layer clothing and wear loose-fitting clothing, so it can be easily removed and won’t agitate the skin while it is worn. At this time of year, many places will have the heat running, so as you go in and out from cold parking lots into heated stores or homes, the change in temperature can make it difficult to plan apparel. But avoid individually warm, tight-fitting garments and opt for several lighter, looser layers for flexibility.
  • Keep the sunscreen handy.
    It’s easy to forget that the sun can be just as potent–if not more so–in wintertime than the middle of summer, but ask skiers and they’ll tell you all about sunburn on the slopes. Not to mention that it’s really easy to lose track of how much time you’ve spent out in the snow having fun, but reflective light also can be damaging to the skin. You may want to opt for spray-on options to avoid having to make contact with the skin with rub-on lotions. And if possible, seek out sunscreens designed for those with sensitive skin.
  • Guard against goggle friction.
    Many folks wear goggles when playing in the snow or taking part in winter sports. Remember to protect the face from any potential rubbing or irritation that can be caused by such pieces of protective eyewear. In those sensitive spots such as over the ear, under the eye or on the bridge of the nose, place a thin layer of non-stick dressing to provide a little cushion before fastening on the goggles.
  • Keep backup shoes handy to replace wet, snow-filled pairs.
    Skin can get really irritated when it becomes damp, whether it’s sweat or water from excessive rain or snow. Plan ahead and bring a backup pair of shoes for after you reach your destination to avoid chapped or swollen feet and to get them out of drenched footwear as soon as possible.
  • When in doubt, cover it up.
    It can be helpful to simply cover up any exposed skin before heading out into the snow for play activities. If there’s a chance a snowball or snowman is on the agenda, pull on the mittens. To avoid sunburn or even windburn, gently layer a soft (not scratchy) scarf around the neck and don some earmuffs. Prevent unexpected sunburn on the scalp by wearing a hat made of a soft material.

Sources:

EB Resource Blog

Related Posts:

Practical Lifestyle Tips for EB Families

EB-Friendly Clothing Tips for Spring

Plan Ahead for Summer Safety

Back to School Tips