VHL Alliance US non-profit “is the pre-eminent resource for patients, caregivers, researchers, and the medical community” especially for disease-specific or biomedical information

VHL Canada

Group Emails:
Feb '18 - Calgary and Toronto
Mar '18 - What a Few VHL Parents Say...

Support Groups, make connections, get help [and give help] - Mayo Clinic

• 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..

Supports

• There are different types of (social) support through family, friend, and formal sources: Emotional, Practical, Sharing points of view, and Sharing information 

Social support is commonly categorized into four types of behaviors. Four Types of Supportive Behaviors:

1. Emotional
2. Instrumental
3. Informational
4. Appraisal
   

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



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!

Manage stress: Strengthen your support network - APA (American Psychological Association)

•  “In fact, experts say, almost all of us benefit from social and emotional support… You don’t need a huge network of friends and family to benefit from social support… Seek out peer support.  If you’re dealing with a specific stressful situation — such as caring for a family member or dealing with a chronic illness…”

Wellspring’s brochure called “Strength, Confidence, Skills, and Hope” is inspiring as it describes a..

• “focus on the person, not the disease”

Tips for Doing Your Research on the Web:

• Figuring Out Health News (article)
• How to Evaluate the Reliability of Health Information on the Internet (Concordia University Student Centre)
• Slides and audio tutorial: how to evaluate the health information that you find on the Web (Medline Plus)
• Women [and men] Wading Through the Web: A Health Toolkit (Women's College Hospital Toronto)
• Know the Science: 9 Questions To Help You Make Sense of Health Research (National Center for Complementary and Integrative Health (NCCIH), US)
• Interactive VHL-disease Information Tool (GARD)

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

• The WHO-5 Well-Being Index: A Systematic Review of the Literature

Other:

• Management of von Hippel-Lindau Disease: An Interdisciplinary Review
  
• Canadian Cancer Society’s (hereditary cancer syndromes)
• Medical Marijuana in Canada Webinar (CAPO, Jan 22/16)

What is VHL? Tip Sheet with diagram

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.