Medical Resources: The Most Recent Information at your Fingertips

A Multifaceted Approach

Whether you are a self-advocate or caring for a loved one with Down syndrome, each individual’s needs are unique, just like anyone pursuing a healthy lifestyle. In supporting the health and wellness of those with Down syndrome, we know a multifaceted approach is the best plan. It should be a collaboration with physicians, parents, self-advocates, specialists, nutritionists, and therapists, to name a few. With that in mind, here are two helpful tools for reference.

The Global Down Syndrome Foundation has created a valuable resource: Medical Care Guidelines for Adults with Down Syndrome. This guide offers evidence-based medical recommendations for adults. Published in JAMA (the Journal of American Medical Association), it covers nine topics related to health and wellness, and offers a concise and helpful checklist for record keeping. It includes a helpful checklist to maintain for your records, as well.

If you’re looking for an in-person experience, consider a Down syndrome clinic. One to research is The Down Syndrome Clinic and Research Center at the Kennedy Krieger Institute, at Johns Hopkins. This clinic helps patients reach their full potential as independently as possible. They focus on providing individualized clinical evaluation and management, professional training, and research. The clinic is on campus at Johns Hopkins University in Baltimore, Maryland.

Finally, as research continues to help us understand the diagnosis, the National Institutes of Health (NIH) has set up a registry so you can stay in the know on new developments and research. You can learn more about The Down Syndrome Consortium here. It encourages research on the health of people with Down syndrome and the exchange of information among members and members of the Down syndrome community.

What are your favorite resources for medical or therapeutic reference? We’d love to hear from you! You can reach out though our Contact page in our About section, or email us at: hello@dashandscout.org. And check back often, we will update our information as we learn about new resources for you and for our community!