Reflections on DCC 2016

This year’s Debra Care Conference in Grapevine, Texas (just outside of Dallas) held July 24-27 offered many of the same valuable experiences as past events but it definitely felt like a new and different event. I wanted to share some observations and thoughts about the conference, including some changes or additions. The first noticeable change on the surface is the name, of course, taking on the organization’s identity as part of the conference title. This was a really good opportunity for families in attendance to connect with various individuals associated with the organization and specific resources available through the organization.

 

 

Each conference leaves its own distinct impression and carries a unique flavor from its predecessors in part because it is hosted by a new city and state when it is held every two years. This was the sixth event I have been a part of but I will admit that my own experiences are shaded differently than other attendees as I am on the Board for debra of America, I do work for a wound care company and was an EB parent, so I bring a unique balance of a variety of emotions to this event each time I attend.

 

I especially love seeing what the planners will offer children attending in the way of activities at that year’s venue. This year, the play area was in the same room as exhibitions and included everything from superheroes and cheerleaders to storytellers, musicians and even a monkey! Everywhere I looked, children were having a blast. One amusing aside: there was a sheriff’s convention being held there on the property at the same time as the DCC. The kids really made quite an impression on the officers in attendance, because they made a point of returning to the kids’ room to talk with them. These tough, no-nonsense authority figures suddenly became like big teddy bears as they interacted with the children. It was beautiful to see.

 

If you asked me what my favorite presentation was, I would not be able to single out any one person. I am always in awe of the extremely intelligent and genuinely caring health care professionals who work so hard to help EB families and take part in this event to meet them and answer questions. I enjoyed listening to all of this year’s presentations.

 

I did spend much of my time talking with attendees in the exhibition hall located just outside the presentation room. Another favorite part of the event for me is getting to visit with the families, some whom I have known for the past 12 years and other new families that I get to meet for the first time at the conference.

 

As always, I was very impressed with the Gaylord Hotels staff. This was the third conference in a row hosted by a Gaylord hotel, this time at the Gaylord Texan Resort and Convention Center, and I am constantly amazed at how well they accommodate such a large group of people. The unique way they can bring the outdoors inside and provide a setting that is safe, warm and uplifting to truly welcome our EB families is outstanding.

 

One of the changes made to this year’s schedule was that debra began many of the presentations later in the morning which was helpful to those families who needed the extra time for bandage changes in the morning or who wanted free time to explore the beautiful hotel. In general, there were more opportunities for free time this year which is a wonderful thing when families are getting the unique chance to meet up and visit with each other, and let their kids play together in a fun, safe environment.

 

A final side note: This year’s conference fell on my daughter’s birthday (she would have been 13 this year). It made being at this particular conference a little harder knowing that she could have been one of the kids hanging out in the teen room. But that is not the path I was given. I would not be working for a wound care manufacturer if it wasn’t for the experience she gave me. She has helped me help others and that is what was meant to be.

 

I hope everyone who got a chance to attend this year’s event took away valuable information and many happy memories. I look forward to the 2018 event already.

Preparing Your Butterfly Child for School

*Information provided in this blog is not medical advice and is not intended to, and does not, replace the advice provided by your health care professional. Always seek advice from your licensed healthcare professional in regards to any healthcare needs.

 

It’s that time of year again when families transition into different schedules and routines: the start of a new school year. For some in the south, its already begun. For our friends in the north, it looms.

 

For EB families, the school year presents its own set of challenges as parents have to worry not only about children’s usual needs like outfits and school supplies but also about ensuring their child’s physical safety offsite in an environment not likely to be EB-friendly. In the past, we have blogged about things you can do to support your child and work toward a healthy and fun school experience.

 

  • Plan Ahead:  a few years ago in a blog titled “Connecting with Your Child’s School about EB,” we offered different things you could do as a parent to set up your child for comfort and success in his or her new weekday surroundings. These may include everything from packing a bag of extra comfortable clothing to be stored in the classroom to scheduling a private meeting with the school nurse and teacher to discuss your child’s health challenges beforehand.
     
  • Start a Conversation:  in another past blog titled “Bringing Your Child’s School on Board,” we noted various ways you can initiate a discussion about EB in your child’s school and what people you may want to get involved in the talk. The first step in educating others is introducing them to the language and basics about epidermolysis bullosa. With the use of some other key sources of information and educational resources, you can begin to build a support network of educational professionals also looking out for your child when he or she is away from home.
     
  • Lean on Others:  we may say this often, but it is true — we are all here for each other. Our online community of EB patients and their families continues to grow and other families can be a great source of ideas and support for challenging life transitions such as sending our butterfly children to school. In another previous blog titled “Families Helping Families,” we note that social media tools can be invaluable for reaching out to other parents with questions or polling them about challenges that come up during the school year. As long as we are sharing our experiences with one another, we can all become better equipped to handle whatever comes our way, and as EB parents who have already guided our children through the transition to school, we always have that gift of experience to offer others.