Peer group support
  • “process of sharing common experiences, situations or challenges. Peer support is an exchange of getting and giving support. It involves the practice of self-care and sharing “what works”. Peer Support is not based on medical models of illness and disorder, rather it is the provision of emotional, practical and informational supports by people with lived experiences, to cultivate mutual empowerment. Peer support initiatives are run by and for the participants.” (SHRC)
   
  • While not everyone wants or needs support beyond that offered by family and friends, you may find it helpful to turn to others outside your immediate circle...A support group shouldn't replace your standard medical care, but it can be a valuable resource to help you cope... (Mayo Clinic)

Biopsychosocial*
Through the looking glass: an exploratory study of the lived experiences and unmet needs of families affected by Von Hippel–Lindau disease (European Journal of Human Genetics)
  • "Despite well-established protocols for the medical management of Von Hippel–Lindau disease (VHL), families affected by this rare tumour syndrome continue to face numerous psychological, social, and practical challenges..."

Mind-Body Practices in Cancer Care (Current Oncology Reports)
  • “Mind-body techniques such as meditation, yoga, tai chi, and qigong have been found to lower distress and lead to improvements in different aspects of quality of life. It is essential that the standard of care in oncology include distress screening and the delivery of different techniques to help patients manage the psychosocial challenges of diagnosis and treatment of cancer…”

Exercising to relax (Full article, Harvard Medical School Online)
Since we have a chronic genetic illness like VHL, we are prone to stress that is chronic. I liked this article because it categorizes the various reliable stress management strategies or exercises into 2 types:
  1. Aerobic and endurance: those physical exercises involving the body. E.g. Walking, jogging, ellipticals, sports, group activities, and stretching
  2. "Autoregulation": those mental exercises involving the mind. E.g. Breathing exercises, meditation, Benson “relaxation response” talking things out with someone, writing/journaling, and progressive muscle relaxation
Stress symptoms of body and mind amplify and interact with each other, so presenting 2 "types" of strategies  seems more manageable and memorable. Usually various stress reduction strategies are talked about separately.

Different types of stress, APA
  • Chronic genetic illness like VHL involves stress that is chronic

Emotional health, US VHLA Handbook, p.79 (authoritative patient handbook)
  • “The buildup of stress can often feed or cause anxiety and depression. Practicing stress management techniques may bring some relief from anxiety and symptoms of depression; however, [sometimes] it is important to seek advice from a licensed social worker or medical professional, including your primary care physician. He or she can evaluate you and may recommend a combination of medications and counseling, as well as a mind-body program or other stress management approaches…”

Parents with children with chronic illness review article
(Hospital for Sick Kids)
  • Although article mentions "heart disease", the tips can be transferred to other chronic conditions like VHL!

Supports
Group Email Updates / E-Newsletters
Wellspring’s brochure called “Strength, Confidence, Skills, and Hope” is inspiring as it describes a “focus on the person, not the disease”

Code for Volunteer Involvement: Values, Guiding Principles and Standards of Practice. See Volunteer pageCanadians questioning how charities are using donations, new study finds

How to Evaluate the Reliability of Health Information on the Internet

Slides and audio tutorial: how to evaluate the health information that you find on the Web 

Wading Through the Web: A Health Toolkit ( It's for everyone! )

Management of von Hippel-Lindau Disease: An Interdisciplinary Review
 
Canadian Cancer Society’s (hereditary cancer syndromes)

Distress in partners of individuals diagnosed with or at high risk of developing tumors due to rare hereditary cancer syndromes. (abstract only)

Medical Marijuana in Canada Webinar (CAPO, Jan 22/16)
WHO-5: The 5-item World Health Organization Well-Being Index (WHO-5) is among the most widely used questionnaires assessing subjective psychological well-being - English version
Mental Health Meter
Assessing our mental health is not as simple to do as measuring our physical health. There are no scales or endurance tests that rate mental fitness. But with the help of the Canadian Mental Health Association’s Mental Health Meter, you can reflect on your unique strengths and identify areas where your level of mental fitness could be improved to help you cope with all of life’s up and downs. 

Cut/paste words or URL via Google Translate
Mission: to improve the lives of those affected by VHL in Canada
VHL Canada is a registered charity with Canada Revenue Agency (CRA) BN: 800804676RR0001
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