Pain is a serious medical concern in America. For those with a bleeding disorder, pain as a result of a bleeding episode can result in acute and/or chronic pain issues. This toolkit provides resources about many pain related issues in the form of:
- presentations (recorded webinars, videos)
- downloads (articles, documents)
- links to other resources
If you or a loved one need help, the Substance Abuse and Mental Health Administration’s (SAMHSA) National Helpline is a confidential, free, 24-hour-a-day, 365-day-a-year, information service, in English and Spanish, for individuals and family members facing mental health and/or substance use disorders.
Note: Inclusion of resources by a third party site or organization do not constitute an endorsement by HFA, it’s Board, volunteers or staff.
|Webinar: Pain Management & Opioid Dependency: A pain management doctor and a psychiatrist address solutions to pain management as well as the growing concern of opioid use across the country. In addition two personal stories from members of the bleeding disorders community shed light on what living with pain and dependency.|
|HFA Families Webinar – Tackling Pain & Anxiety: Parents as Coaches for Coping: This Families webinar provides techniques for parents to help their children cope with pain and anxiety, and how to empower them to voice their concerns. Parents will also learn tried and true tips to help their children manage pain and how to make infusions and other procedures less stressful for the entire family.|
|HFA Webinar – Ouch! Does it Always Have to Hurt: In this HFA webinar, an HTC nurse and pharmacist help patients and parents learn to recognize and treat pain appropriately and give an overview of drugs used in bleeding disorders to treat pain. They share case studies from both a pediatric and adult to discuss what pain inventions are available and appropriate. They also discuss dealing with some of the stigma related to using pain medications.|
|HFA Young Adults Google Hangout – Creative Strategies for Coping with Pain: In this interactive forum four young adults in the bleeding disorders community shared how they have managed their pain by using therapeutic and non-pharmacological ways via art, comedy, cooking, and other physical activities/wellness practices.|
|Office of Institutes of Medicine (OIM) Report, “Relieving Pain in America”: The 2010 Patient Protection and Affordable Care Act required the Department of Health and Human Services (HHS) to enlist the IOM in examining pain as a public health problem. The OIM released a blueprint for transforming the prevention, care, education and research about pain.|
|The American Academy of Pain Medicine: The American Academy of Pain Medicine (AAPM) is the medical specialty society representing physicians practicing in the field of pain medicine. Use this link to view of list of short videos about pain and pain related issues.|
|Children’s Hospital and Clinics of Minnesota, “Dr. Friedrichsdorf’s Top 10 Apps for Pain Management: A list of ten apps suitable for children to use for distraction and pain management.
|HFA Mom’s Blog, “Infusing Love”: Poke, Pain & Pressure: In this Infusing Love blog, a mom of son with hemophilia shares the struggles of self-infusion for her child.|
|National Hemophilia Foundation, Hemaware Pain Management: This link from the National Hemophilia Foundation includes articles on a variety of issues related to pain management.|
|World Federation of Hemophilia, “Care and Management of Hemophilia”: This document contains a variety of treatment protocols for managing hemophilia; section 1.9 specifically addresses pain management.|
|FDA Resources: These resources from the Food and Drug Administration offer advice on the safe use of prescription pain medications.|
|Child Life Council – Comfort Tips & Tricks: This document contain tips for parents on how to distract children from pain during procedures and helpful language to use with a child.
|Psychology Today: This website has gathered renowned psychologists, academics, psychiatrists and authors that produces a live stream in the field of psychology.|
|American Pain Society: The American Pain Society is a multidisciplinary community that brings together a diverse group of scientists, clinicians and other professionals to increase the knowledge of pain and transform public policy and clinical practice to reduce pain-related suffering. This document is a position paper about children with chronic pain.|
|The ILC Foundation: The ILF Foundation exists to inspire hope and contribute to the health and well-being of children and families living with hereditary and complex chronic pain diseases by providing a care model of health promotion education and knowledge sharing partnerships through a family centered, peer-to-peer support network and program. ILC Foundation is based in Canada. The following are resources from their website:|
|University of Michigan Health System – Pain and Your Child or Teen: This article offers a comprehensive look at pain in children and teens, as well as links to other resources.|
|Cincinnati Children’s Hospital Medical Center – Article on Pain in Spanish: This article is a comprehensive look at pain in children written in Spanish.|
|Partners Against Pain: Partners against Pain is a website run by Perdue Pharmaceuticals.
|Arthritis Foundation, “Treating Pain with Medical Marijuana”: This article from the Arthritis Foundation addresses the use of medical marijuana for arthritis and it’s potential benefits and cautions.
*HFA strongly encourages patients and caregivers to consult with their healthcare provider and follow all appropriate laws and regulations regarding medical marijuana in the state in which you reside.
LINKS TO OTHER RESOURCES
|PainToolkit.org: The Pain Toolkit concept originated back in 2002 when Pete Moore was writing a self-management article for pain health care professionals in Europe.|