PPMD is excited to share that at our 30th Annual Conference, taking place June 27-29, 2024, in Orlando, Florida, the PPMD Care team will host a “DIY Care Binder” station where families can create a personalized binder filled with important information regarding Duchenne/Becker care to help you navigate routine care and emergencies.

A diagnosis of Duchenne or Becker comes with an overwhelming amount of information, all of which is important to know. At times, particularly during emergencies, it can be difficult to find and communicate all the necessary information to properly care for your child with Duchenne/Becker.

“The care binder is so important when you are stressed to have all of the information there and communicate it clearly to healthcare providers. It helps you advocate for your child in a way that is so necessary in an emergency situation.” –Rachel Poysky, mother of a young man living with Duchenne.

Many families have found that keeping all of their child’s medical information in one place by creating a “care binder” can help to guide necessary actions to take during emergencies. Binders can include clinic notes, medication lists, and emergency precautions as well as contact information for family members and your medical team. Having your child’s vital information and resources in one place can be extremely helpful, especially when you encounter healthcare providers who may be unfamiliar with your child and/or Duchenne/Becker. 

Stefanie Killian, the mother of a young man with Duchenne, shares her family’s experience:

“I created a medical binder for Sam so all his medical information would be in one place and easy to access. I had no idea how helpful his medical binder would be until Sam fell and broke his femur in the middle of nowhere while we were on a safari trip in South Africa.

The medical care Sam needed was a two-hour helicopter ride away and there was no room for either my husband or me to ride with him. Sam was also given pain medication and was no longer able to advocate for himself.

I was worried, but I didn’t panic because I knew I had prepared for this exact situation. When the paramedics arrived, I was able to go over emergency care information, precautions, and Sam’s medical history using the documents in the binder. I also pointed out his current medication list and contact information for his many doctors.

I was so worried that I would forget something important, but it was easier to remember the emergency information and precautions to share when it was in print in front of me. There was spotty phone service and almost no wi-fi, so it was helpful to have everything on paper. All of Sam’s medical information and previous test results, including pulmonary and cardiac function, were easy to access in the organized binder.

The paramedics read the details in the binder during the flight and passed it on to the ER doctor. They said the ER doctor would be very thankful for the detailed information. 

I am convinced Sam’s medical binder saved his life when there were no family members to advocate for him and he could not advocate for himself. We always have his medical binder nearby, especially when we are away from home.”

Families should feel equipped when communicating and advocating for their child’s healthcare needs. Join us at PPMD’s 30th Annual Conference to build your care binder. If you are unable to make it to PPMD’s 30th Annual Conference, downloadable care binder resources will be made available on our website in the following weeks for families to print at home.

For more information on emergency care, visit our website or schedule a PPMD For You 1:1 appointment with PPMD’s Care team.