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.

Sharing My EB Story: A Conversation with Stevie Hislop, Part II

Last week, we introduced you to a young Australian woman, Stevie Hislop, who has found tremendous value in social media tools for connecting with others who share her interest in beauty care. While exploring this passion, she’s also discovered that she has a platform with which to share her own EB story every day and educate others about a disease that most of them know little about. In part two of our conversation, we get to the heart of what compelled her to take her personal story and love for beauty care online.

 

 

EB Resource (EBR): Tell us about your decision to launch your own YouTube channel and blog. When was that and what led you to do it?

Stevie Hislop (Stevie): I started my Youtube channel two years ago on January 14, 2010, when I uploaded my very first video called "Very First Blog." I look back now and watch that video and think “OMG, what was I thinking?! <laughs> The inspiration behind starting my YouTube channel was from watching Top YouTube people like AllThatGlitters21, KandeeJohnson and FleurDeForce. And then I started finding Aussie YouTube people. I was fascinated with one Aussie beauty guru named Amysass7. I always thought it was an American type of thing until I found Amy, and that was when I realized, "Hey I could totally do this." I wanted to put myself out there to the world and to inspire other people living with EB who are the same as me to show them that they can be beautiful no matter what they look like! I thought if I put myself out there to the world, maybe someone who watches me will become inspired to overcome their fears and face their obstacles. I wanted to express this through my videos to inspire other girls living with EB that even though they are covered in bandages, they can feel beautiful about themselves, as well.

Being myself on camera is one of the things I love about making videos. I'm talking to my camera and I can say what I like without being judged for the way I look. Another aspect of my YouTube channel is the makeup/beauty side of things. I loved the fact that I could transform my facial features to look beautiful, and to have flawless skin when living with EB is sometimes pretty much impossible and I've only just mastered that over the past two years. Having that feeling of having a beautiful face is priceless. It boosted my confidence to go out of the house and be the person I truly want to be! I've always had my blog on Google. From early on, I would blog about my EB doctor visits and what has been happening in my life (which I still do!). But once I started on YouTube, I started to blog about different beauty products, too. Then recently I bought my own domain and I transferred all of my posts over to www.BeautyButterly89.com. I'm so proud of this site as I have created it from the ground up! Also on days when I don’t feel up to filming, I can just blog about something fun in the beauty world that I'm loving!

 

EBR: Have you always had an interest in beauty products?

Stevie: I have somewhat been interested in makeup, although I didn't really have a womanly influence that much throughout my life to say, “Wear some lippy or eye shadow.” In high school, I would wear eyeliner ‘cause it was the cool thing to do when at school, but once I started watching YouTube makeup tutorials, I really became influenced by the brands and ways to apply certain products. I was hooked by the age of 18! At school, I absolutely loved art and I'm sure this has pushed my passion for makeup artistry, too. I would love to be a pro makeup artist! People often ask me how I hold the makeup brush, and I always reply, "Where there's a will, there’s a way." I absolutely love all kinds of makeup, but I love bright, bold colors. They’re way more fun!

 

EBR: Tell us how learning about this area of interest and sharing your insight through the videos online makes you feel. What do you personally take away from doing this?

Stevie: I take so much pride in my YouTube channel and my blog. It's changed my life in many, many ways that are very overwhelming! All of the wonderful supportive comments I receive inspire me to get up in the morning. It pushes me to be the best I can be! I've met so many amazing people at YouTube events and made close friendships with them. All aspects of YouTube and my blog have given me the confidence I never thought I would have. I can't wait to see what the future holds for me!

 

EBR: You've been able to make a lot of connections with people through your blog and the video series. What has this meant to you personally?

Stevie: People often say I've inspired them! But really it’s a two-way street. My followers inspire me each and every day. Their comments give me so much support!

 

EBR: You previously shared online about attending a special camp specifically geared for both kids and adults with EB that was held here in America. Tell us about that experience. And what did you take away from it?

Stevie: I've attended two camps in America, and they were amazing. Being able to hang out with other people that suffer from the same condition as me made me feel like I wasn't alone! Both camps where amazing, but USEB was the best. I loved the fact that it was run by people living with EB for people with EB! This was the camp I traveled to alone for the first time halfway around the world. It was the best experience of my life.  Even though it was a bit scary, I actually did it!

 

 EBR: How would you describe what life has been like as an adult with EB? Tell us about a typical day for you.

Stevie: Life can be hard some days, but I take each day as it comes! On days when it's bath day, I need to be in the bath by 9 a.m. I usually am still in bed when my dad comes home from work to run my bath! I’ll be in the bath till 10 a.m. when the nurse arrives and she helps me get out of the bath and applies all of my dressings. This can take any where from 1 1/2 to 2 hours depending how I'm feeling on the day! By 12:30 p.m., I’m dressed and ready to face the day. I usually just hang around in my room, make myself something to eat and then head straight for my computer for Facebook, YouTube, Twitter or online shopping. Around 5 p.m., I’ll head out to the club where I meet up with a few friends. I really enjoy going out to the pubs and clubs and just having fun as any 22-year-old would do. My day usually ends around 12 a.m. and I go to sleep and start all over again the next day… My life is pretty easy-going, one might say, but I do have my bad days where I'll just lie in bed hating on the world! But I always pick myself up and get on with what needs to be done!

 

EBR: For any of the parents out there reading this story or younger patients with EB, do you have any information or advice to pass along about what they can expect growing up with the disease? Maybe something that you’ve learned or experienced along the way that you wish you’d known earlier.

Stevie: Always ask for advice and help if you’re not coping with the care for your child, even if you need a break each day of the week. There are so many organizations out there that can give you a helping hand. And to parents, don’t always think just because your child has EB, they can’t do anything. There are a million and one things in this world that I can’t do, but I've been giving a go at whatever my heart desires. Don’t wrap your child's emotions up in cotton wool. Make the most out of life. We’re all given only one chance, so make it the most amazing chance possible!

 

EBR: If there were a particular message that you could communicate to others who either don’t have EB or understand it, what would you want to tell them?

Stevie: I would have to say don’t judge a person for the way they look. EB is not a contagious disease, and I and many other EB sufferers are just the same as other people. We wish to have normal skin as well! To explain what EB is to a person who has never heard of EB before, I usually say our skin is just like a butterfly's wing that can tear at the slightest touch.

 

EBR: And for others reading this who, like you, work hard each day to live with EB, what do you want to share with them?

Stevie: If you have dreams and goals but are too scared to complete them because you’re worried about what other people may think of you, go out there and be the person you truly want to be! Take each day as it comes. If it is a good day, go out and do something you love doing, because you never know what the future holds. And on those bad days, just relax knowing that you had fun yesterday. Face your fears and find inspiration from your favorite music superstar or maybe even your favorite beauty guru on YouTube.