Thank You, EB Voices!

We wanted to take this month that celebrates thankfulness to send along our own gratitude to the individuals and groups whose work and words have helped to raise awareness, and, in some cases, research or support dollars for those diagnosed with EB and their families. We have frequently featured them here and called them "EB Voices" because they, in their own unique way, have spoken up and made their voice heard. This can be really difficult, particularly in a world of so many loud voices booming back at us while we try to bring focus to a rare disease like epidermolysis bullosa.

We have often featured those voices through interviews or special guest blogs. Since some of our followers could be new to our blog or have only joined us this year, we thought it would be a great opportunity to share some of those past links with you as our way of introducing you to merely a handful of the wonderful people out there who do their part to raise awareness about EB every day – some are patients, others  family members, and still others, authors or advocates, but all of them have something to say. And we are appreciative that they take the time to do something about it.

So we introduce you to some past featured EB Story conversations. Thanks for reading!

The Story behind Sharing My Story

A Guest Blog by Jessica Kenley*

*Jessica Kenley is a mom and author of KIDOWED, a book in which she shares her own personal account of her family’s experience with EB and the impact of losing two of her children to the skin disorder. She was recently featured in a two-part Q&A series. Click here to read part I and part II of that interview.

This entry is about my experience in publishing a book about my life in a two-year snapshot for the world to see—an e-book—but still a book.

I started writing a diary every day on the sage advice of an amateur grief counselor. I should clarify—she was not an amateur at grief, having lost a husband who she had had more years on earth with than not, but possibly an amateur at counseling. Of the variety who thinks the glass is always half full if you look at it in the right light and that we of the grieving community should discard our negative thoughts and only voice and allow ourselves to think the positive ones. She didn’t quite know what to do with me.

Most of the people in our group were older women who had lost husbands of your everyday garden variety diseases of old age —cancer being the most common. I should point out that I am not discounting or minimizing their grief at all, but I did find it difficult to relate to them. I was the youngest in the group by at least 25 years and the only one who was there as the result of losing a child—well on my way to two, for that matter. I didn’t have any positive thoughts. I was furious. We eventually started having “individual sessions” and she told me one day after listening to me rant over iced teas for a while that I was going to “burn down the world” someday. I still don’t know what that means, but I think she meant it in a good way, as if I had the potential to change the things about the world that I didn’t like. In any case, that’s how the book began. Eventually it turned into something that I was writing as if I was talking to someone else, if only because I didn’t have anyone to talk to in such a frank and honest manner about what was running through my head on a constant basis, especially while I was watching my daughter die in front of me every second of every day while simultaneously knowing what was going to happen to her and being absolutely and completely helpless to stop it.

The bottom line is that the book is brutal to read. It asks people of all walks of life to stand beside me through my hellish experience and endure the aftermath, too. It is not an easy read. It wouldn’t even be an easy read if it were fiction. I wasn’t thrilled with the idea of people I didn’t know reading extremely personal and potentially humiliating things about me (such as my dating and drinking habits) while I was trying to cope with the deaths of my children, but I did feel like the importance of EB awareness trumped any qualms that I might have about judgment from strangers, which is why I published it, and I would encourage others to do the same.

The response I have gotten from people who have read the book is overwhelmingly positive, with some negativity and judgment that I believe comes mostly from misunderstanding sprinkled in here and there, which is not so bad, all things considered. You can’t win ‘em all, as they say.

Here are the things I wish I would have known before I published the book or that I wish a friend might have told me, even if it was hard to hear:

  1. You’re not likely to get rich or famous. Not even close, especially with an e-book. Authors who make a living from writing do it for a living, all the time, every day, and fail continuously before success, even if they have something that is extremely important to say, and these are the ones with advertising and agents.
  2. People will judge you relentlessly and harshly, if only because they cannot identify with your situation. Do NOT, under any circumstances, reply or comment on negative reviews of your book. It makes the author appear petty and unprofessional. On the flip side, DO encourage people who liked the book to post positive reviews. The sad fact is that people who don’t like it are much more likely to take the time to review it than people who do, so when people contact you telling you how much they like it, tell them to post a review.

Here is what I can tell you…

  • If you think your book is worth publishing, I can guarantee you that a lot of other people will, too. You cannot fake passion or truth. If you truly believe that the world should know about it, then say it. Really, what do you have to lose?
  • You will most likely create a following of people who are passionate about what you publish, and even if it’s just a few people, who cares! Those are people that will spread the word where you couldn’t.

I published Kidowed because I thought that more people should know about EB. The e-book has been in existence only since July 2012, and about 10,000 people have read it. The vast majority got it for free, and I got some bad reviews, but I got many more good ones, and consider this—upwards of 8,500 of those people never knew EB existed before I published it, and now they do.

Because I published this book, I was afforded the opportunity to do a reading at a prestigious international conference that had doctors and researchers from 25 different countries who were all involved with EB in some way, which I count as the highlight of my career as an EB advocate. And my little e-book made it to #1 for free memoirs that weekend on Amazon.com, if only for a short time.

Also, I am currently a guest blogger on this fantastic website—would you have known that I existed if I hadn’t published a book? A difference is a difference, so don’t hesitate when given the opportunity to make one. You won’t regret it.

Q&A with Author Jessica Kenley, Part II

Last week, we shared Part One of a recent interview with Jessica Kenley, the author of KIDOWED. The book recounts the story of a single mom and her experience raising two children diagnosed with Epidermolysis Bullosa who quickly succumbed to the skin disorder during their infancy. Now as mom to young Lilliana, who has not been diagnosed with EB, Jessica continues to interact with other EB families, some struggling to manage the stressful day-to-day care involved and others trying to cope with the loss of their child to the ravaging disorder.

In this conclusion of the Q&A, Jessica talks about the outcomes of her experience and where she sees the greatest need within the EB community.

 

 

Q. EB Resource (EBR): What would you say is the overall message of your book, "KIDOWED?"
A. Jessica Kenley (Jessica): There are several messages that I think are extremely important that I tried very hard to convey with the book — the most critical one is that Epidermolysis Bullosa in all of its forms is a horrible disease that robs children and families of having a normal existence in multiple ways, and there is no good reason why more people shouldn’t know and care about it so that more money can be raised for better treatments and a cure. The "sub- messages" include ideas like how some people could be more sensitive to grieving parents, how the medical community could improve some of their practices (especially when it comes to honesty) with the parents of sick children and, with any luck, a message of hope to people who have lost someone very dear to them. It is possible to survive these things, even if one does get stuck in a stage of grief for a very long time.

Q. EBR: What has been the most unexpected outcome for you from writing the book?
A. Jessica: The most unexpected negative outcome of the book has been the judgment, rage and sometimes outright hatred that I got from some people, both people that know me and people that don’t, about my personal choices, my feelings and how I portrayed some people in the book, even though all the names were changed except for mine and my children’s. I never expected that the message that some people would get from the book would not be about spreading awareness about EB at all, but that I somehow was out to hurt people emotionally, even though I had made several disclaimers (both in the book, online and personally to people) about how the book is a journal and was not edited or censored in any way. I did not feel like the book should be censored, because it might take away some of the emphasis and meaning of my words. I did not want it to come across as "sugar-coated" in any way. I also was surprised that some people in my family stopped talking to me at all because they didn’t "want to be in my next book." Others asked me not to put pictures of them holding Ethan and Kaylee on the Kidowed Facebook page, because they wanted their privacy protected. That really surprised me.

I will always be extraordinarily proud that I was able to be Ethan and Kaylee’s mother, and that I got to be involved in their short lives to the extent that I did, and I guess I mistakenly assumed that other people in my family felt the same. Honestly, I have stalled on the second book because of these unexpected critical reactions. Obviously I knew that not everyone would like the book, but I did not predict some of the very hurtful reactions I got.

The most positive unexpected outcomes of the book have been the great many new friends that I have and old friends in the EB community that I have been given the opportunity to reconnect with. I was extremely honored to be invited personally by the President of DebRA Canada to speak at the DebRA International Congress in September of 2012, especially since the book had only been published in July and only in an online format. I also got a lot of help in spreading the word about the book from people in the EB community, many of whom I didn’t even know, which was a really wonderful surprise, since the book has never been formally advertised. I just cannot express how much it means to me when people take the time to message me or write lovely reviews out of the kindness of their hearts — or follow the Facebook page. It is really heartwarming and inspiring that the book has reached thousands of people. It makes me feel like it was well-worth it to publish it when someone who has never heard of EB reads it and then becomes involved in the cause. There’s just nothing like that kind of feeling. It makes me feel like I am doing my small part in spreading awareness.

Q. EBR: Since releasing your book, you’ve been very open in sharing opportunities for others to talk with you about your experience and have even made the book available on several occasions as a free e-book download. What were your reasons for offering free e-book downloads?
A. Jessica: I wanted to make sure that even people who maybe couldn’t afford the book could still have the opportunity to read it. I would never want it to be cost-prohibitive, and the point of the book was never to make money on it. It was and is to spread a very important message about a devastating and little-known disease.  This is why I have also put the Kindle Free Reader Apps link on the KIDOWED page several times. I want people who don’t have a Kindle to be able to read it too if they want to. The most successful free giveaway was the weekend of the DebRA International Congress, where in only two days, 5,360 people downloaded the book for free, and it actually made it to #1 on the Amazon site for memoirs, thanks to the advertising efforts of the wonderful people at DebRA Canada. It was simply amazing, and nothing could have made me happier. My dream is that one day soon EB will be a disease that the whole world knows about, so that we can finally have a cure. Too much time has gone by already without good treatments, especially for children whose families are underinsured or do not have health insurance. This has to change.

Q. EBR: Have you been involved with any specific EB-focused organizations or patient/family advocates to collaborate on educational campaigns or other efforts to raise awareness about EB? And if so, can you talk about those?
A. Jessica: I am on many EB-focused Facebook pages, and several personal pages or blogs of people who have EB or a child with it, and I try whenever I can to offer what I know about it when someone has a question about wound care or advocacy programs or really anything that I can help with. I have also recently gotten involved with Debrabox.com, which is out of Ireland, and is a new company that is just getting off the ground that will sell merchandise in order to raise money for EB charities. Unfortunately, I have only just recently become involved with this company, so I don’t have a whole lot of information about it, but I have high hopes for their efforts, especially since the man who founded it has a son with EB and is very motivated.

Q. EBR: From your own communication with EB-focused organizations and other families who have shared their stories, whether it’s through social media, blogging or talking with local media, where do you see the greatest needs of the EB community?
A. Jessica: The greatest need that I see is still money for struggling families, better insurance coverage and more patient advocates, especially in hospital settings. EB is an extremely expensive disease to treat, even with health insurance, which is not something that everyone realizes. When a child is diagnosed with EB, the entire family’s whole existence often becomes dealing with it, and things like traveling to doctor visits constantly can be taxing on even well-off families, especially if they need to go to an EB clinic that might be thousands of miles away and require a lengthy stay. This might also include hotel stays and large food bills, not to mention all of the specialized equipment that this might necessitate.

I hear heartbreaking stories often about families trying to raise money for a special seat, a wheelchair, a van or even actual wound care supplies that they just cannot afford. Other supplies that EB children and adults might need that are rarely covered by insurance include things like specialized feeders, special diapers and clothes, nutritional supplements. The list goes on and on. This should never happen. These families undergo so many hardships as it is that they just should never have to worry about being able to afford the best care possible for their children. My children both had two different insurance companies, and even eight years after Ethan was born, my finances have never recovered. It is also extremely difficult for single parents to afford caring for a child with EB, as working is often nearly impossible, and for people who have adopted or are in the process of adopting a child with EB, especially from a different country, because then they might not be eligible for health insurance for an extended period of time. And of course, God forbid the worst happens, funeral costs are very expensive too, as are headstones. The cost of this is also something a parent should never have to worry about, as they are already enduring the most painful thing any parent can.  I’ve even read one particularly heart-wrenching story about a child who died at a hospital that was very far away from the family’s home, and they had to have a fundraiser in order to transport the child’s body home and to pay for funeral costs. How awful.

The other great need, as I mentioned, is more patient advocates. The ones that I know of are fantastic people who seem to literally eat, sleep and breathe EB, and they do a WONDERFUL job, but there just aren’t enough of them. I realize that this must be a very taxing job to have emotionally, physically and financially, and my guess would be that there aren’t more very active EB advocates, because they probably suffer from "burnout" or "compassion fatigue," such as is common in health care and social work. My dream job would be one that entailed going around to hospitals that currently are treating an EB patient and stay at the hospital with them to support the families and the patients and educate the medical staff on how to best care for an EB patient and also to give the parents "breaks" to sleep or eat or get out for a while without having to worry about their child. I would have loved it if someone was there for me when my son was in the hospital who knew better how to handle the medical professionals and also the basic "ins and outs" of the health care system. Studies have shown over and over that any patient gets better care when they have a strong advocate and goodness knows that these families can never have too much help or support.

Q. EBR: If somebody out there reading this interview feels inspired by your story and wants to do something similar by writing their own book, what advice can you offer them?
A. Jessica: Even though it wasn’t my first choice, I actually would recommend putting a book online first to gauge the reaction and success before spending the money to advertise and having to go through the many inevitable and discouraging rejections from publishers. Part of the reason I hadn’t published my book sooner is that I didn’t have the resources, and had I known how fast and easy it is to publish online, I would have done it much sooner. I still do hope to publish "KIDOWED" and its sequel in print, but the online publishing option was really a blessing to me. My other bit of advice would be to "Just Do It!" I agonized and put off publishing "KIDOWED" for years, because I just didn’t know how it would be received, and basically I was scared that it would end up being a terrible decision, but it wasn’t, and I’ll never regret it even if it never sells another copy. It has given me the amazing opportunity to reach thousands of people that might otherwise have never heard of EB, and that’s nothing to sneeze at!

Q&A with Author Jessica Kenley, Part I

 

We enjoy introducing the community throughout the year to various people who are in some way involved with raising awareness or focus about EB. One such person is author and mom Jessica Kenley. Jessica lost two of her children, Ethan Tyler and Kaylee Marie, to the Junctional-Herlitz subtype of Epidermolysis Bullosa during their infancy. She later gave birth to her third child, Lilliana Marie, in 2009, who has since shown no symptoms of EB.

In 2012, Jessica decided to share her own EB story by writing and publishing her book, KIDOWED.

Her account of her family’s experience with EB has been described as honest, stark and brave. Her decision to tell the story through a “no holds barred” approach has been met with mixed feedback because of its strong language. We reached out to her recently to get her thoughts on what her process was in sharing her story, what the experience has been like interacting with other EB families and others in the community and how she has handled receiving both positive and negative feedback from others in doing so.

In this first blog of the two-part interview, Kenley discusses her motivation behind writing the book and the responses to it.

Q. EB Resource (EBR): You detail in KIDOWED what it has been like as a parent to experience the devastation of the loss of two children to EB. For those of our readers who have not yet read the book, what compelled you to write your own book and share such a deeply personal experience with others?
A. Jessica Kenley (Jessica): First and foremost, I wanted more people to know about EB, because I was shocked that so few people had ever heard of it, especially that the doctors — even the pediatric dermatologists that I took my firstborn Ethan to — had virtually no experience with it, and those who had had never treated the subtype that my children had. This is a disease that has devastating effects, a high mortality rate, and is just plain horrible to be afflicted with, yet I had never heard of it, and the vast majority of the people that I talked to hadn’t either. It was shocking.

Secondly, I knew that there had to be more people out there like me — and by that I mean people who had gone through a terrible experience and were unable to find the good in it for a very long time, if at all. I was extremely angry for many years, and still am sometimes, about losing my first two children in such a horrific way while I stood by seemingly helpless. I was not and am not religious, and was not comforted at all by the fact that people told me that they were “in a better place” or “went to be with God.” All I knew was that they were supposed to be here on Earth with me, and it just seemed incredibly unfair, especially with the odds that I faced of even having a child with EB, that they first of all had the only known universally fatal subtype, and secondly that they both were afflicted with it with only a 25% chance of the genes matching up that way with each pregnancy. I was just furious, and I knew I couldn’t be the only one, considering that anger is one of the documented phases of grief.

Q. EBR: When you told others of your plan to write the book, what kind of response did you get about doing it?
A. Jessica: Overall, I got a fairly good response. People in my family and friend circle thought that it was a decent idea, although I did have several people proofread it, and one woman who is a therapist said that she couldn’t put it down, but at the same time wanted to “throw it across the room.” I knew that the book would not be easy emotionally for anyone to read, but I still felt like it was very important to publish it. A couple people recommended that instead of publishing it, I should instead start a blog to see how that went, but that didn’t make a lot of sense to me, because I figured I could reach more people if I published it, and I also didn’t have an endless amount of things to write about after Kaylee died. I didn’t want the book to be mostly about me, I wanted it to be mostly about the children and my experience as a single mother to two children with EB, and not so much about my experience after they died, because I am certainly not an expert on grief or on how to successfully continue with one’s life after their children have died.

Q. EBR: When you set out to write the book, what objectives did you have in mind to get the story out there?
A. Jessica: To be quite honest, my only objective was to try to spread awareness about Epidermolysis Bullosa, and since I am not a medical professional, I couldn’t really write a whole lot about the science or medicine behind it and expect people to take me seriously, so I wrote about what I knew, which was my feelings and experiences I had while I was the mother of two children with EB. The book is simply my journal, and I started writing it as if I was talking to another person just because I was trying to justify the crazy thoughts in my head to myself at the time, if that makes any sense. I didn’t know when I started writing it if I ever would actually publish it, but I knew that if I did, it would have to be very honest, because I think that is the best way to reach out to and relate to other people.

Q. EBR: You are quite candid in the book both with your honesty about the conversations and interactions you describe but also in the language that you use throughout the book. Why was that important to you in the telling of the story?
A. Jessica: It was important to me to convey what I was actually feeling and thinking at the time, even if it was irrationally angry or sort of emotionally over the top, and even if that meant using a lot of curse words, italics/bold/capital letters. I think it’s difficult to express very strong emotions and tone in the written word sometimes, and I wanted people who were reading it to feel like this is how it would sound if it were actually coming out of my mouth if we were having a conversation. I didn’t have a good “sounding board” at the time I was writing the book, someone I could say anything to, so I guess that what I wrote is how I would have been speaking if I were talking to my best friend. I also didn’t want the book to be “sugar-coated” at all or censored in any way, because I felt at the time like this would have made it less “real” and people wouldn’t relate to it as well. The bottom line is that most people have had thoughts like the ones I wrote down, even if they don’t say them out loud, and I didn’t feel like a diary should necessarily be required to be polite.

Q. EBR: So what kind of feedback have you received from others so far?
A. Jessica: The majority of the feedback about the book has been good, especially from people who went through a similar experience as me. I do, however have a few 1-star and 2-star reviews on Amazon.com, and several people in my family and in my town who were portrayed in an unflattering light were extremely angry with me. Some felt as if their privacy had been violated, and others were embarrassed about what I wrote about them. The people who don’t know me and criticized the book did so by attacking my personal life choices, such as choosing to have two more children after my son died.  I have apologized extensively to the people who were hurt unintentionally and contacted me about it, both publicly and personally. My intentions for this book were certainly not to sling mud, but to convey my feelings about a horrible situation that I was trying to survive with admittedly poor coping skills.  The rest of the people who contacted me and had positive feedback have been many, and I try to focus on that.

Because of the book, I am friends with an entire new group of people related to the EB community that I would have never known had I not published it, and for that I am extremely grateful.  Many people have moved me to tears with their heartfelt messages about how they could identify with my feelings of anger and helplessness, and several have told me that they were so glad that I published it because they felt like they were the only ones who felt similar to the way I did after a loved one died, as if they were abnormal and it was socially unacceptable for them to express those feelings, because the push in our culture really is for people to “move on” and “find the good” in the situation.

Q. EBR: In the book, you talk about the expectations people had of you as a parent and the various ways they responded to you and your children. What can you share with our readers about that aspect of dealing with EB, something that really stood out from your experience that perhaps parents of newly diagnosed children could learn from?
A. Jessica: It was very apparent with me right from the get-go that I would have to develop a pretty thick skin about my decisions involving Ethan and Kaylee’s care, especially some of the controversial medical decisions I was making, such as narcotics at an early age and resisting invasive treatments like g-tubes, dilations and even blood transfusions. So few people have ever heard of EB, including the medical community, that parents of newborns with EB are required to become instant experts in order to care for their children well. My advice for parents of newly diagnosed children would be this: TRUST YOURSELF! No matter what everyone else’s advice is, and whether it is asked for or not, you will receive a whole lot of it, but you will know what works and what doesn’t for your child, and what is best for them.

Also, I definitely did not do this, but I would recommend coming up with some “canned responses” to the very insensitive and offensive questions that people ask, because it certainly didn’t do me any good to be nasty about it. These would include things like when people say, “Oh, so he/she just has sensitive skin, right?” and then launch into a story about how they had to buy special laundry detergent or something for their child in an effort to relate to your situation. I found that if I tried to explain the mechanics of the disease to these sorts of people, their eyes would glaze over and they wouldn’t pay attention anyway. It just seemed that they wanted to talk about themselves, which irritated me to no end. The bottom line is that there are only so many people that are willing to be educated, and the rest are really not worth your anger or frustration, because it certainly won’t do you or your child any good.

Next week, we will feature part two of the Q&A with Jessica when she talks further about other outcomes from writing the book and needs within in the EB community.

Raising Awareness for EB

We are always appreciative of those whose actions and words support EB families and, in the process, attract attention to help make others aware of epidermolysis bullosa and the families it impacts. This month, we’ve selected three different examples of voices who are helping to enlighten and compel others to want to learn more.

  • Jessica Kenley
    The author of the book Kidowed shares what life is like when a mother loses two children to the Junctional Herliz form of EB. Kenley paints a very honest, real and stark picture of life with EB and of the family left behind trying to cope with painful loss. Not everyone has embraced Kenley’s direct approach to storytelling and the sometimes stark language she uses throughout her book, but by telling her story, she broadens awareness of epidermolysis bullosa to a mass market who might otherwise not have heard of the disease. She has continued this conversation with readers on her Facebook page and recently offered readers a free download of her e-book on Amazon.com for a limited time. Click here for more information about the book.
     
  • Joss & Main
    Recently, the home goods website collaborated with a group of celebrities to create a fun, exciting fundraiser opportunity to raise funds for the Epidermolysis Bullosa Medical Research Foundation (EBMRF). Stars like Courteney Cox, Orlando Bloom and Zoe Saldana agreed to take part in the “Curate for a Cause” event during which each celebrity picks out their favorite pieces of home décor for a month with proceeds from sales of these items being donated to EBMRF. We love it. Shopping, celebrities and helping others — it’s a great combination and a creative way to educate others about EB. Actress Bridget Moynahan launched the first set of celebrity picks in August. Orlando Bloom’s September picks are still available online through today (Oct. 9); Courtney Cox’s picks are on display from Oct. 9-Nov. 6; Zoe Saldana’s run from Oct. 23-Nov.20; and Matthew and Camilia McConaughey’s picks are featured Nov. 6-Dec. 6. For more info about the campaign, go to the Joss & Main site.
     
  • The community of Auburn, NY
    When Easton Friedel was born in late August in New York’s Cayuga County, one more family received the news that their newborn had been diagnosed with epidermolysis bullosa. During the next few weeks, news spread throughout the family’s hometown of Auburn and through traditional news sites like Syracuse.com, as the local community joined forces to support parents Danielle and Jared with calls, messages, fundraising and other support, including a community-wide prayer vigil. The collective spirit spread online through a Baby Easton Facebook campaign, as reported by social-media commentators Mashable.com, which shared the family’s story online and garnered attention of supporters across the country and around the world. It attracted 27,000 page “likes” in 20 days and raised $63,000 in just five days time for the family’s impending medical bills. Auburn, NY is not unique – there have been other communities who have demonstrated their ability to rise to an occasion and come out in support of one of its own — but it is a great example of just how much a community can do, going well beyond its own city limits to reach out to the world and not only support a family in need but raise significant awareness for a disease so few people know about. Thanks, Auburn, for reminding us of the real definition of community.