Emotional and Mental Health Resources for Experienced Parents and Caregivers

You have been on the JM journey for more than a year, possibly much longer, and you are looking for help with your or your child’s emotional and mental health needs. Do you know the warning signs of depression and anxiety? Has your child had a mental/emotional health assessment? Here are some resources for you, your child, and other family members.

At the American College of Rheumatology conference presentation in 2020, Pediatric Rheumatologist Dr. Tamar Rubinstein estimated that “anxiety, depression, feeling suicidal, and other mental health events are likely around 30% for pediatric rheumatic diseases. These rates may be more than double than the general population.” 1

We also conducted focus groups on parent perspectives of our children’s mental health at our 2018 national family conference, the results of which were published in the Arthritis Care & Research Journal in January 2021. The conclusion states, “JM is associated with intense patient and family distress, although resiliency may emerge by young adulthood. Despite existing barriers, increasing access to counseling, peer support groups, and online resources with rheumatology facilitation may be effective intervention strategies.” 2

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“As a Pediatric Rheumatologist, I know that emotional and mental health are important to optimize overall health and integral in chronic conditions like JM. If you have concerns about your child’s emotional health that haven’t been addressed, please let your provider know so you can work together to get the needed help. Kudos to Cure JM for developing a position for a new Mental Health Coordinator to provide and develop more resources for this!”

Susan Kim, MD, MMSc
Pediatric Rheumatologist and Associate Clinical Professor of Pediatrics at UCSF Medical School sees patients in the Rheumatology Clinics at UCSF Benioff Children’s Hospitals San Francisco and Oakland sites.

Affordable and Accessible Treatments for JM

Affordable and Accessible Treatments for JM

Two special guest speakers, Michelle Vogel, MPA, IV Solutions RX, and Laurel Cherwin, BSN, RN, IgCN, Octapharma, shared information on navigating affordable treatments and care for JM patients.

The FDA’s Ruling on Vamorolone in DMD

You may have heard about yesterday’s FDA ruling, which approved vamorolone as an alternative steroid for use in Duchenne muscular dystrophy.

Vamorolone is a new steroid alternative with fewer side effects than prednisone. The drug aims to preserve the beneficial anti-inflammatory and muscle-strengthening characteristics of corticosteroids, while decreasing some of the unwelcome side effects, including bone fragility, delayed growth, and behavior changes.

As we learned in yesterday’s announcement, vamorolone was found to be both safe and effective as a therapy for Duchenne muscular dystrophy in its newly approved indication.

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