What to Expect at the Duchenne Muscular Dystrophy Clinic
Scheduling
Marissa Winfrey serves as the Duchenne Muscular Dystrophy Clinic Coordinator. She will help you arrange your child’s clinic appointment. Marissa will also help arrange other clinic appointments and related testing for the same day, saving you and your family time.
On appointment day
Park in the South Garage. The entrance is on Children’s Way between 23rd Ave. South and 24th Ave. South. Take advantage of our free valet parking service on the main level. Then ask one of our attendants to direct you to the second-floor main entrance to the hospital.
We will provide you a detailed appointment list and maps to help you complete your visit schedule. Many other tests, such as cardiac MRI, pulmonary function tests and blood tests, will take place before you come to our clinic.
Many of your tests (PFTs, cardiac MRI) will be in the morning. Our first appointments of the day are at noon. Please get lunch or a snack before your appointment, as the afternoon can be long with multiple providers. If your morning testing runs late and there is not much time before your noon appointment, call us and let us know you are stopping to get food. We would rather have everyone in the family be happy and well fed, even if that means you are a few minutes late. We have a limited selection of snacks available in our clinic.
When you arrive in our clinic, we will check you in, and then perform basic vital signs tests on your child. All patients complete brief screening forms recommended by Parent Project Muscular Dystrophy and other DMD. We will complete the check-in process in one of our exam rooms. You will remain there as each provider scheduled to see your child comes to you.
Who will you see in our clinic
The providers you will see will depend on your child’s age and other medical needs. They may change from one clinic visit to the next. Most boys will see Neurology, Cardiology and Pulmonology doctors at each visit. All boys age 16 or older will see Palliative Care experts. We also have specialist from Physical Therapy, Nutrition and Social Work available.
As an academic medical center we are focused on training the next generation of DMD experts. The medical fellows you may see in our clinic have already completed their initial training in Pediatrics or Neurology and are learning to care for boys and young men with DMD. You may also meet one of our research nurses if you qualify for a research study.