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Young Kids PlayingMental Health Resources for JM Families

Having a chronic and rare disease is a challenging experience for anyone to go through, and especially difficult on children and adolescents. According to the 2013 Rare Disease Impact Report, 69% of patients with a rare disease experience depression and 82% of patients experience anxiety and stress.*

In order to understand how our families cope with mental health, we collaborated with Andrea Knight MD MSCE, an expert in the autoimmune and mental health fields. We surveyed Cure JM patients and parents on the “Mental Health Needs of JM Patients and Potential Interventions” and found that 28% of JM adolescent and young adult patients reported depression and 33% reported anxiety. These percentages are two to three times higher than the 2016 national average of depression in adolescents (12.8%) and young adults (10.9%), according to the National Institute of Mental Health.

Researchers do not know whether mental health problems in JM are caused by the underlying illness (from inflammation and vasculitis), the treatments, genetics, or the challenge of living with a chronic and rare disease. But, we do know that patients, physicians, and researchers rank mental health as an important research priority for Cure JM.

Cure JM Foundation recommends that mental health assessment and treatment be an integral component of comprehensive care for children, adolescents, and adults with JM, and for patients in remission from JM. To this end, Cure JM Foundation is currently developing resources to educate physicians and patients about mental health issues in Juvenile Myositis. Cure JM is also developing a plan to help pediatric rheumatologists screen for mental health issues and recommend further evaluation or treatment if warranted.

Juvenile Myositis can impact the entire family, so it is beneficial for siblings and parents to receive counseling, along with the JM patient. In a 2011 study of chronic disease caregivers in the American Journal of Hospice and Palliative Medicine, a study led by Dr. Fauman discovered that 56% of mothers and 20% of the fathers had depression.* 

The following information will help you better understand the signs and symptoms of depression and anxiety and how to get help. Please consult a physician if you have any concerns about your child, yourself, or anyone in your family.

Know the Signs of Depression

Signs & Symptoms of Depression from the National Institute of Mental Health

Depression (major depressive disorder or clinical depression) is a common but serious mood disorder. It causes severe symptoms that affect how you feel, think, and handle daily activities, such as sleeping, eating, or working. To be diagnosed with depression, the symptoms must be present for at least two weeks.

  • Constantly feeling sad, anxious, or even “empty,” like you feel nothing
  • Feeling hopeless or like everything is going wrong
  • Feeling like you’re worthless or helpless; or feeling guilty about things.
  • Feeling irritable much of the time
  • Spending more time alone and withdrawing from friends and family
  • Not doing as well at school
  • Losing interest or pleasure in activities and hobbies that you previously enjoyed
  • Eating or sleeping more than usual or less than usual
  • Feeling tired always (and not related to JM)
  • Feeling restless or having trouble sitting still
  • Having trouble concentrating, remembering information, or making decisions
  • Having aches or pains, headaches, or stomach problems (not related to JM)
  • Thinking about dying or suicide or trying to harm yourself

Know the Signs of Anxiety

Signs & Symptoms of Generalized Anxiety Disorder from National Institute of Mental Health

People with generalized anxiety disorder display excessive anxiety or worry, most days for at least 6 months, about a number of things such as personal health, work, social interactions, and everyday routine life circumstances. The fear and anxiety can cause significant problems in areas of their life, such as social interactions, school, and work.

  • Feeling restless, wound-up, or on-edge
  • Being easily fatigued
  • Having difficulty concentrating; mind going blank
  • Being irritable
  • Having muscle tension
  • Difficulty controlling feelings of worry
  • Having sleep problems, such as difficulty falling or staying asleep, restlessness, or unsatisfying sleep

JM-Related Factors Leading to Depression and Anxiety

  • Worrying about flares
  • Stress on the family
  • Changes in appearance
  • Living with chronic disease
  • Pain, fatigue, weakness, and disease symptoms can cause depression
  • Juggling multiple appointments
  • Coping with unpredictability of disease
  • Taking multiple medications with psychiatric side effects
  • Infusions, injections, procedures, and surgeries can be traumatizing or at a minimum, highly stressful
  • Transitioning from pediatric to adult care
  • Feeling alone / isolated due to rarity of JM
  • Lack of understanding from friends and relatives about JM

How to Get Help

  • Psychologists
    Psychologists have an advanced degree in psychology and help people cope effectively with mental health or emotional issues.  They generally provide talk therapy (psychotherapy) and other evidence-based therapies, such as cognitive-behavioral therapy techniques.  They cannot prescribe medications (except in Louisiana and New Mexico) but oftentimes work in collaboration with primary care physicians or psychiatrists who can prescribe medications. 
  • Psychiatrists
    Psychiatrists are qualified medical doctors who specialize in treating mental health issues and disorders.  Psychiatrists differ from other mental health professionals in that they may prescribe medications, and they offer additional therapies for severe depression, such as a newer treatment called transcranial magnetic stimulation (TMS). Psychiatrists may also conduct physical examinations, order and interpret lab tests and brain image scans, such as CT scans and MRIs.
  • Telemedicine 
    Telemedicine in psychiatry, using video conferencing, is a validated and effective practice of medicine that increases access to care, especially for those with physical limitations or severe anxiety disorders. “The American Psychiatric Association (APA) supports the use of telemedicine as a legitimate component of a mental health delivery system to the extent that its use is in the best interest of the patient and is in compliance with the APA policies on medical ethics and confidentiality.” 
  • Hospital Social Workers 
    Some hospitals have social workers who help patients and their families understand their illness, work through the emotions of a diagnosis and treatments, and provide counseling about the decisions that need to be made. Social workers can be essential members of interdisciplinary hospital teams and oftentimes provide mental health services.
  • School counselors/psychologist/social worker
    Many public schools have a full-time or part-time counselor, psychologist, or social worker who students can talk to about social and emotional concerns.  These counselors can counsel the students, provide information, and also provide outside referrals.
  • Antidepressants/Medication
    Medications can play a role in treating depression and anxiety, along with “talk therapy”.  Antidepressants are commonly used to treat depression and anxiety with the most popular type called selective serotonin reuptake inhibitors (SSRIs).   Cure JM Foundation does not endorse or recommend any particular drug, supplement, or herb.  For more information on medications for depression and anxiety, please visit this link on the National Institute of Mental Health:  https://www.nimh.nih.gov/health/topics/mental-health-medications/index.shtml
  • Support System of Family and Friends
    Having family and friends who you can rely on and talk to about your feelings will go a long way in helping you cope with JM.
  • Support Groups
    Joining a support group of people who have been through similar experiences as you can help you feel less alone.  Join Cure JM to find out more:  http://www.curejm.org/join/index.php
  • Join a Cure JM Chapter
    Cure JM has 15 regional chapters who hold meetings and events. LEARN MORE HERE
  • Attend a Cure JM Conference, Walk, or Event
    Cure JM holds regional and national conferences, as well as regional walks and events, which are a great way to meet others with JM:  http://www.curejm.org/news/events.php
  • Mindfulness / Meditation / Yoga / Massage
    Relaxation techniques can help with stress and depression.
  • Exercise
    Physical activity can help reduce stress and alleviate depression.  Consult with a doctor before starting any exercise program.
  • Practice Good Sleep Habits
    It’s important to get enough sleep, and it helps to go to sleep and wake-up on a consistent schedule.
  • Eat Nutritious Foods
    Nutritious foods are important for physical and mental health. Our brains function best when they receive proper fuel. Contact your doctor or hospital social worker to arrange a consultation with a nutritionist.

About Insurance

The Affordable Care Act expanded coverage for mental health care, and many insurance companies now cover a portion of, or a certain number of, “talk therapy” sessions and/or medications.  Check your insurance enrollment materials or call your insurance company for more information.

Resources

Comprehensive list of therapists, psychologists, psychiatrists, support groups, and treatment centers by city and zip code.  Can be sorted by insurance, issues, type of therapy desired, language spoken, and more. https://www.psychologytoday.com/us/therapists

The link above to Psychology Today (PT) is not associated in any way with Cure JM Foundation. Cure JM is providing this link with the intent to provide users with general information. Cure JM does not recommend or endorse any specific professionals, tests, products, procedures, opinions, or other information that may be mentioned on the PT site. Reliance on any information provided on PT website at our invitation or via other visitors to this webpage is solely at your own risk.

Hotlines in the United States

Numbers below provided by “Psych Central”, an independent mental health online resource run by mental health professionals.

  • Suicide Lifeline:
    800-273-8255
    The Suicide Lifeline provides 24/7, free & confidential support for people in emotional distress, as well as prevention and crisis resources for you or your loved ones.
  • Crisis Text Line
    Text HOME to 741741
  • TXT 4 HELP
    Text the word “safe” and your current location (address, city, state) to 4HELP (44357)   which allows you to text live with a mental health professional:  www.nationalsafeplace.org/txt-4-help
  • National Help Line for Substance Abuse
    (800) 262-2463
  • National Institute on Drug Abuse Hotline
    (800) 662-4357
  •  Eating Disorders Awareness and Prevention
    (800) 931-2237
  • National Youth Crisis Hotline
    (800) 442-HOPE (4673)

Research

Sources:
Shire.  Rare Disease Impact Report:  Insights from Patients and the Medical Community. April 2013.  globalgenes.org/wp-content/uploads/2013/04/ShireReport-1.pdf

Knight, Andrea.  Mental Health Needs of Juvenile Myositis Patients & Potential Interventions. 2018 Update on JM Care & Research.  June 2018.

Prevalence of Depression in Adolescents.  National Institute of Health. 2016. www.nimh.nih.gov/health/statistics/major-depression.shtml

Predictors of depressive symptoms in parents of chronically ill children admitted to the pediatric intensive care unit. 2011.
www.ncbi.nlm.nih.gov/pubmed/21454321

Knight, Andrea et al.  CARRA Mental Health Workgroup.  Mental Health Needs of Juvenile Myositis Patients & Potential Interventions. 2018 Update on JM Care & Research.  June 2018.

Muir, Emily.  The Rare Reality:  An Insight into the Patient and Family Experience of Living with a Rare Disease.  Jan. 2016
www.raredisease.org.uk/media/1588/the-rare-reality-an-insight-into-the-patient-and-family-experience-of-rare-disease.pdf

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment provided by a qualified mental health or health care provider. Always consult your doctor before trying anything you read here.