Blogging: Inspiration & Education

It’s been amazing to see how much the blogging community has grown among EB families, caregivers and patient advocates in just a few years. We’ve certainly been big cheerleaders here encouraging people to share their story, however they feel most comfortable telling it. For some, it’s writing songs or poetry; for others, reaching out to the media or lobbying elected officials. Some very creative people have found ways to use video, photography, art and jewelry-making to tell their story. But for bloggers, it is an ongoing commitment they make to share a very real, honest, sometimes painful look at life with EB from day to day. Making the decision to chronicle our lives through blogs should not be a decision taken lightly.

If you have been considering a launch of your own blog, it’s wise to ask yourself a few questions for consideration before you do.

Why are you launching a blog? It’s important to really understand your intention and reasons behind writing a blog, because you are making a significant time and energy commitment, both physically and emotionally. Once you begin making connections and starting a conversation with others, if you’re not fully vested in the reasons for doing the blog, you may find yourself quitting or contributing sporadically. For others who have now invested in learning about you and your story and started a dialogue with you, this can be disheartening for them, as well, if suddenly you are no longer an accessible voice.

What do you want the tone of your blog to be? The serious nature of EB does not mean that if you are a witty person, you’re restricted from being yourself. In fact, sometimes reading someone else’s funny perspective on a serious subject for which both can relate can actually be a real stress relief. Some bloggers choose to vary the tone to match what is going on presently in their lives. What is most important to remember is that you set the tone early on in your blog, so keep that in mind as you share with others. The more open and descriptive you are with your language, the more candid you relay personal incidents, the more you open the door for others to be just as candid and descriptive in their comments and feedback.

Who are you writing to (or writing for)? You may be simply writing to share your story for others going through similar circumstances, for personal stress relief to anyone willing to “listen,” or maybe specifically to educate those who don’t know a thing about EB. At some point, you may find yourself writing to all of these audiences at the same time as people share links with their friends, some of whom are familiar with EB, and with others, many who probably have never heard of it.

How much are you choosing to share? Again, this is a decision you really must make when you first undertake something as personal as a blog. Are there particular subjects off limits with regard to living with EB? Maybe there are specific people whom you feel you must protect and leave out of the story – by your choice or at their request. Set your parameters and stick to them from the start. It’s true that blogs can evolve as their purpose and following expands, and you may wish to reshape the nature of what it is you talk about or how openly you talk about these other topics, but let that happen naturally.

What do you hope to achieve with your blog? What is your core goal for the reader? Inspiration? Education? Motivation to act in some way? It’s helpful to determine if you are aiming to provide a sense of support and community, maybe more so than you may have experienced when your family was first educated about EB, for instance. There are definitely many more online resources today for communicating with others than there were five years ago, for example. There are forums like EB Friends and great focused nonprofits like DebRA, EBMRF, the Butterfly Fund, PUCK Fund, the Jackson Gabriel Silver Foundation, and others focused on supporting and connecting EB families to help them meet the unique challenges they face every day. Will your blog be a place to bring others to these groups to support their mission, or will you be painting a candid picture of life with EB so that people learn about it but  take action as they feel compelled to on their own?

Ideas for an Extra-Special Birthday

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

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

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

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

Giving Thanks by Giving Back

At this time of year, many of us reflect on that for which we are most grateful. For some EB patients and their families going through an especially troubling time, this can be difficult. To members of our community, let’s use this opportunity to show gratitude for the advice, education and support each of us has been fortunate to receive from other families, those care specialists who have sincerely invested themselves in our lives, and groups like DebRA, EBMRF, EB Friends and more. How can we do that? We can pay it forward by sharing that knowledge and support with others now facing similar challenges.

So ask yourself: what is the best way I can show appreciation for the information and support my family has been able to receive and how can I take that support and information and pass it along to others who could benefit, too? Jot down your own thoughts here and make a plan to get started – today or this weekend!

In a way, we consider holidays like Thanksgiving a special gift, because they promptly remind us that no matter how bad things may get, we have also experienced a richness that other families and those not diagnosed with the disease don’t always get to know: a sense of community and genuine appreciation for the time spent together with loved ones.

Have a safe and happy Thanksgiving!

Sources:
Blogging Your Story: Five Things You Should Know (EB Resource)
Social Media for EB Storytelling (EB Resource)
Planning Your EB Awareness Campaign, (EB Resource)
100 Links for EB Families (EB Resource)

Related Posts:
Doing Our Part: What Can You Share?
Making the Hunt for Good Info Easier
The Importance of Connecting

Doing Our Part: What Can You Share?

*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 a medical care or mental health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your personal health care provider.

As people living with EB every day, whether as family members or patients ourselves, we often come into contact with others along the journey. Some can share similar experiences, and for others the subject of epidermolysis bullosa is new and confusing. How can we take our own EB experience and use it to offer support or knowledge to other EB families, especially those just beginning to gather information and resources to understand this new way of life?

  • Share supplies no longer used or those in excess. For parents who are not planning to add to their family and who may have originally purchased specific accessories or equipment to manage the care process for their baby with EB, find a family who might be able to use these items.
  • Volunteer to provide sitting support. Of course, this can only work in those instances where both families live in the same general vicinity but recall your own early weeks and months of caring for your baby. Wasn’t it challenging not having babysitting support, if only to allow time for an occasional quiet dinner with each other or a bike ride or run to recharge? Share the gift of support with someone in shoes you once wore and may still don.
  • Get involved in online group chats and forums. Joining communities such as EB Resource, EB Friends and others can provide a wonderful outlet to share information and answers to each other’s questions and provide support and insight as someone who has faced these same early EB challenges before.
  • Start a blog. This option may not be for everyone, but it doesn’t require you to be an ace reporter or best-selling novelist: simply someone willing to open up and share personal experiences, offer tips gained along the way and practical strategies learned by making mistakes and trying just about everything to help your loved ones. If by blogging about your own experiences, you can save another family from making the same mistakes or spending a lot of money to find the “right” tool that works, wouldn’t it be worth the time to share your story? Blogging can be a great way to connect with others and share thoughts on wound supplies, EB-friendly clothing brands and socializing strategies as families set out to interact more with others.
  • Reach out directly to new EB families. Once you learn of another new EB family in your community or perhaps a neighboring city or state, take the time and make that connection. Reach out to introduce yourself and offer to be there as a resource should they ever have a question about something that you may have experienced early on in the care process. While you can never and should not substitute for the guidance of a licensed medical professional, sometimes just having another person listen to you and offer support as a fellow parent and caregiver can be helpful.

When you first learned about EB, did anyone reach out directly to you to lend moral support or offer formal or informal educational resources about the disease? Think about your situation today: what can you do to support others?

Source:
EB Resource Facebook Community

Related Posts:
100 Links for EB Families
Support Networks vs. Support Groups
Social Media for EB Storytelling

Support Networks vs. Support Groups

For some EB patients and their families, taking part in a support group or EB-specific community online, by phone or in person, may be second nature, but for others, the very idea of putting yourself out there—sharing your story, your struggles or insecurities—may be viewed as a frightening, stressful concept.

Every family is different, and sometimes I’ll work closely with some families who feel that facing EB on a daily basis as a patient, caregiver or family member is a private matter and not one that they choose to share with others around them. I respect their wishes and offer as many different resources as I can think of to provide some kind of assistance of a physical or financial nature. But I always encourage families to build a strong social support network and not dismiss the true power of interacting not only with those who understand firsthand the ongoing challenges that a life-threatening disease like EB can present, but also with those in your social circles (friends, co-workers and neighbors, for instance) who can provide a different level of support, guidance and understanding in their own unique way.

The Mayo Clinic notes that such a strong social support network can offset loneliness and stress, something that EB patients and their families who may experience feelings of isolation know all too well, and provide reinforcement and comfort in their time of need. I’ve had families tell me that they sometimes feel all alone because they are not able to do many of the same things that other families can do with ease, such as travel or play outdoors with their children as often as they’d like, because there are so many safety concerns and preparations that must take precedence and understandably so. But reaching out to your community and finding ways to be active even in small ways—like joining a walking group, visiting your community center regularly or making an appointment with yourself to go to the gym a few days a week—can provide a much-needed outlet for social interaction and a feeling of security.

Where a strong social network can offer a feeling of security and a sense of belonging, a support group may offer EB families an opportunity to truly make the direct connection with others who can identify with caregiving challenges they face on a day-to-day basis or emotional issues tied to the disease’s repercussions. For many, support groups can become a foundation to begin healing as they come to terms with this devastating disease that takes such a toll not only on the patient but also on the family members.

Have you looked into joining a support group or even forming one yourself? You can meet in person once a week or a few times per month. Have you investigated whether or not your local hospital may offer a support group that, while not EB-specific, may include other families who are coping with daily health challenges as your family does? Do you feel a support group may be right for you?

The benefits of a support group can be great, from helping a group’s members overcome their feelings of isolation to giving them a supportive environment where they can talk openly and freely about their challenges and even learn from each other. As the Mayo Clinic points out, a support group should never replace traditional medical care but it can be a helpful coping tool. While there are a variety of formats that a support group can take, the ultimate purpose is usually the same: to allow people with similar problems have a place to express themselves and offer practical advice and emotional support.

To learn more about EB support groups, you may want to visit DebRA’s support resources page for information about what groups are currently established across the country or even inquire inside the EB Friends forum. And don’t be afraid to reach out in the EB Resource Facebook community to ask others about other EB support resources that are available both as in-person and online networks.

Sources:

Stress Management – Support Groups: Make Connections, Get Help, Mayo Clinic

Stress Management – Social Support: Tap This Tool to Combat Stress, Mayo Clinic

Support and Resources, DebRA of America

EB Friends

EB Resource, Facebook

Related Posts:

Join the EB Resource Conversation

The Importance of Connecting

What to Expect in Support Groups

Join the EB Resource Conversation

Since we launched our EB Resource Facebook page over a year and a half ago, it’s been gratifying to watch this community of EB patients, families, caregivers, and supporters take shape and evolve. Any online community requires time to grow, and we’ve been so appreciative of the more than 860 members who follow our regular updates, some frequently contributing by offering feedback about recent blogs, commenting on member posts and sharing personal stories and experiences to educate and support others.

If you haven’t been an active part of the community but merely an observer, we encourage you to take part. It can be a great way to learn from others and connect with people who may share similar questions, concerns, and circumstances. Some members may meet up in our community for the first time and develop relationships further off the page – through emails, phone calls and or even meet-ups later. Online forums like ours and growing communities such as EB Friends are a way for those living with EB to realize they are far from alone and that there’s a substantial network of people available for support.

Here are just a few things overheard in the EB Resource community in the past few months. If you are not already a member of this diverse group, we encourage you to join in the dialogue.

** Please note that comments and recommendations offered by individual members of the EB Resource Facebook community 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 blogged about this year’s EB Patient Awareness Week and encouraged families to begin planning any fundraising activities now. When we inquired about events, we already learned about two later this year. Jamie Grossman Silver shared info about a NYC event, Doubles at the Sherry taking place Oct. 26 (www.jgsf.org) and Laurie Sterner gave us a heads-up about a Sonoma, Cal. event planned for Dec. 3, the Third Annual Butterfly Ball (www.sonomabutterflyball.com).
  • We surveyed parents in the community about SoftSouls, a new brand of soft-soled shoes for babies that we had just discovered and received feedback from a handful of parents who had tried similar shoes for their children. Stuart Kelly Holdings said that his family had used Tru Blue and that they were “brilliant” but required extra care around the ankles because of the elastic. ‘Teri Bienvenu and Elizabeth Spolec Schwartz had both tried Robeez for their babies, Schwartz noting that these “were the only shoes they could wear when their feet were bandaged.”
  • In April, we asked parents of children with EB a tough question – have you been able to employ a babysitter from time to time and for those who did, how they prepared for it. Logan England said that the family simply couldn’t use a babysitter who would have to help with so much for their daughter, including administering meds and doing wound care. Angelique Ringgold noted that she and her husband had tried part-time, in-home day care for their daughter Bella, which involved him going to the location beforehand to survey and “EB Proof” everything, purchasing necessary fabrics and padding, doing a two-day training with the caregivers and providing written instructions. She said, “We agreed to a two-week trial so no one would feel pressured to continue if either party was uncomfortable. It worked out very well. They were so careful.”

  • We wrote in late March about ways families could share their own story through blogging and offered five important pieces of information for them to know before launching a blog. Trisha Knuth pointed out that many parents start out blogging for more personal reasons than raising EB awareness but that it can often lead to that goal, as well. She said, “Many of the blogs were begun as a coping method or a way to communicate with family and loved ones. If they turn it into more than that, usually it’s because the people following them appreciate what they have to say.”
  • Earlier in the year, we shared info about a Prayer Group web page that one EB family had established for their son Jonah. One of our community members Emily Renfrow Guthrie shared how important prayer was for her family and son Jack, who would have turned 18 in April. She urged others, “Please take the time and pray for those affected with the disease and for the families that care for them. They need all that you can give.”

Sources:

EB Resource on Facebook

EB Friends

Plan Now for EB Patient Awareness Week 2011, EB Resource

Blogging Your Story: Five Things You should Know, EB Resource

Related Posts:

Social Media for EB Storytelling

The Importance of Connecting

Learning from Each Other Part I

Learning from Each Other Part II

Making the Hunt for Good Info Easier

One of the most difficult aspects of supporting a loved one with epidermolysis bullosa and educating oneself is gathering information. For many of us, that first time we begin seeking answers to our questions, it can be a bit overwhelming and we may feel alone in the search. But rest assured: you’re not alone. Many of the EB patients and their families who make up our community have been there before, too, and as a result, it’s led to several of them launching their own websites to raise awareness and provide helpful links to information for others. These are just a few websites you may wish to check out to collect a broad scope of information and some unique ways the sites can assist individuals and families on their quest to locate resources about EB.

*Please note: the following suggestions are provided as a courtesy to the EB Resource community for informational purposes only. Suggestions referenced are not intended to be a substitute for seeking the advice of a 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.

  • DebRA of America.
    Most likely, you’ve already visited the DebRA of America website, but have you fully explored it? There may be more stored here than you’ve discovered, including an online archive of the organization’s quarterly e-newsletters, an inspiring collection of EB patient and family stories and access to an EB video to share with teachers and classmates to help educate others.
  • NIAMS.
    The National Institute of Arthritis and Musculoskeletal and Skin Diseases website, part of the National Institutes of Health, Department of Health and Human Sciences, can be very helpful for gathering general clinical information. Its Q&A about Epidermolysis Bullosa provides key answers to questions about the symptoms, treatment and research being conducted with regard to EB.
  • EB Nurse.
    This site coordinated by National Rehab offers a variety of general care information about such topics as nutrition, wound care, pain assessment and newborn care. The site also offers its own monthly e-newsletter, The EB Advocate, which often shares info about recent fundraisers, programs or medical supply background information. Click here to check out the site’s most recently published e-newsletter.
  • EB Info World.
    This recently revamped site features a collection of personal stories, articles from a variety of sources on such topics as wrapping instructions and EB-friendly foods. In addition, it includes sections about the different types of EB citing both data and clinical photos credited to DebRA International.
  • EB Friends.
    The Epidermolysis Bullosa Friends website offers a direct connection to fellow site members who must be registered to interact with other members. The site’s most unique feature is an online forum in which members may pose questions and gather suggestions and feedback from other patients, caregivers or family members who may have shared similar questions or circumstances at one time and can now offer their own experience as a reference point.
  • United Survivors with Epidermolysis Bullosa.
    The nonprofit hosts EB Survivor Camps, unique specialized camps designed specifically for children and teens diagnosed with EB and run by adults living with EB. Parenting looking to learn more about any future camps and eligibility, or those who wish to volunteer or learn more about the organization’s plans to build scholarship and mentoring programs, can contact USeb at epidermolysisbullosa@gmail.com.
  • EB Clinic at Stanford School of Medicine.
    This site coordinated by Stanford’s School of Dermatology features both patient and physician resources, in addition to clinical background about the disease, FAQs, wound care videos, and the research trial information.

Sources:

DebRA of America

NIAMS

EB Nurse

EB Info World

EB Friends

United Survivors with Epidermolysis Bullosa

EB Clinic at Stanford School of Medicine

Related Posts:

Stress Management for Caregivers

Free EB Information Resources

Learning from Each Other, Part I

Learning from Each Other, Part II

The Importance of Connecting

As an adult or child living with EB, sometimes it can be difficult to be as involved as we might like interacting with others and participating in extracurricular activities. We may feel our differences surpass our similarities with others our age. For family members, it similarly presents unique challenges as a parent struggles to relate her world to others who haven’t experienced living with EB firsthand or must explain why it’s necessary to take extra precautions beyond what other parents take with their children. There are simply conversations you want to have with others, but often no one else shares the same kinds of questions or concerns about their children.

As a patient, as a parent, or as a supportive family member, you owe it to yourself and your family to reach out. In the past few years, many more opportunities have emerged for EB families to connect with one another – and many require little or no cost beyond an investment of a little time and a willingness to share and offer support and suggestions to others while they do the same for you.

  • Social Networking.
    Many families have found sites like YouTube and Facebook have provided great channels to share videos, photos, information, and personal support to others. We’ve watched with awe and pride as our own Facebook page has grown from just a few fans to well over 800 followers in less than a year and a half.
  • Online Communities.
    Password-protected web communities such as EB Friends offer safe member-only forums for patients and their families to feel they can share freely and engage in open and honest dialogue with others going through similar situations in a free, nurturing environment.
  • Support Groups.
    While it may be difficult to find support groups specific to EB patients and their families, local hospitals frequently offer a variety of groups that may still be of interest. These may include groups for individuals serving as caregivers for family members or for parents of children battling chronic conditions or life-threatening illness. There are even some online EB support groups available to connect families across the country in a virtual meet-up, such as at MDJunction.com.
  • Fundraisers and Awareness Events.
    More and more families across the country are coordinating fundraisers and other events in their neighborhoods to raise awareness about epidermolysis bullosa. Whenever possible, set out to attend and promote others’ events through your own personal channels to help build a sense of community among EB families everywhere – regardless of their physical location. And if you’re able to attend, too, that’s an even better way to personally make that connection.

Sources:

EB Resource Facebook Community

EB Friends

MD Junction Online EB Support Group

Related Posts:

Stress Management for Caregivers

Free EB Information Resources

The Facts about Depression

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