Depression and Anxiety: Understanding the Signs and Symptoms and Getting Help

February 27, 2024

Having a chronic and rare disease is a challenging experience, and especially difficult for children and adolescents, so it is understandable that mental health challenges may occur within the rare disease community. According to a survey of 1231 rare disease patients and 564 caregivers in the UK, “90% or more of participants had felt worried or anxious, stressed, emotional, low or depressed, and/or angry or frustrated at least some of the time, with experience of suicidal thoughts reported by 36% of patients and 19% of caregivers.” (1) These reports were directly attributed to having or caring for someone with a rare disease. (1) 

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.

Rare-Disease 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 the 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 or isolated due to the rarity of the disease/condition
  • Lack of understanding from friends and relatives about the disease/condition

Learn the signs of depression and anxiety

How to Get Help


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 often work in collaboration with primary care physicians or psychiatrists who can prescribe medications.

Psychiatrists are qualified medical doctors specializing 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 and order and interpret lab tests and brain image scans, such as CT scans and MRIs.


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 patient’s best interest 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 often provide mental health services.

School counselors/psychologist/social worker

Many public schools have a full-time or part-time counselor, psychologist, or social worker with whom students can talk about social and emotional concerns. These counselors can counsel the students, provide information, and provide outside referrals.


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.) Global Genes does not endorse or recommend any particular drug, supplement, or herb. For more information on medications for depression and anxiety, please click here to visit the National Institute of Mental Health.

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 living with a rare disease.

Mindfulness/Meditation /Yoga/Massage

Relaxation techniques can help with stress and depression.


Physical activity can help reduce stress and alleviate depression. Consult with a doctor before starting any exercise program. Exercise is Medicine

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.

Support Groups

  • Joining a support group of people who have been through similar experiences as you can help you feel less alone. Find a support group through Global Advocacy Alliance. Note, you can search by disease or by keyword (i.e. mental health, support groups, etc.)
  • Global Genes holds several international gatherings annually, and GAA members regularly host their own events.

Attend a Global Genes event

Attend a Global Advocacy Alliance member event

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 for Families

Hotlines in the United States

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

Suicide Lifeline

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


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:

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)


  1. Orphanet J Rare Dis. 2023; 18: 45. Published online 2023 Mar 6. doi: 10.1186/s13023-023-02648-y 

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.

This resource was adapted from materials developed by Global Genes partner, CureJM.

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