Passport to well‐being

/Passport to well‐being
Passport to well‐being2018-09-04T14:48:34+00:00

In 2004, the Canadian Hemophilia Society, with the support of Baxter BioScience initiated a new program aimed at empowering people with bleeding disorders, at all stages of their lives, to maximize their quality of life.

In 2013, with the participation of a new sponsor for the program, Bayer HealthCare, the CHS proudly presented a revised version of the components of the program.

The Passport to well-being program provides people with bleeding disorders, at all stages of their lives, with information, skills and strategies to enable them to maximize their quality of life. Key messages relating to the themes are communicated through educational booklets, and workshops targeted at children, adults and caregivers of people with bleeding disorders. .Keep an eye out for special WORKSHOPS in your region!

Passport to well-being is designed around five modules which focus on:

We have all heard the statistics. Nearly thirty percent of Canadian children and youth (2-17 years old) are overweight or obese. This number increases to over 50% in adults. Today’s youth and adults are both less fit and less active. Only 7% of children and youth and 15% of adults meet the Canadian Physical Activity Guidelines, and across the age spectrum individuals spend over 60% of their day in ‘inactive’ pursuits (TV, video games and computer, or ‘desk jobs’). We all know that physical activity is important for weight control. As well, it can prevent heart disease, depression, cancer and diabetes. And, for people with bleeding disorders, physical activity can develop strong muscles to protect joints from twists and strains, and better coordination to prevent falls and injuries.

But what is physical activity?
Some people think of team sports, such as basketball, hockey or soccer, while others think of individual sports like golf, swimming and skiing. Quieter activities such as walking, snowshoeing, gardening, yoga and Tai chi are also excellent physical activities. So are the chores we all have to do: housework, climbing stairs, raking leaves, mowing the lawn and shovelling snow. Physical activity is anything that keeps you moving.

“I hate exercise for the sake of exercise. Don’t ask me to lift weights! But I enjoy shovelling
snow, cutting and pruning trees, and stacking firewood. Not only do these activities keep me in shape, but I accomplish something useful.”
– a 60-year-old man with hemophilia

This booklet, Destination fitness, provides guidance on not only how to keep moving, but also on how to do it safely. Physical activity will help you to achieve an active lifestyle, no matter how old you are or what type of bleeding disorder you have. You may find that the journey toward fitness is easier than you think!

You can consult the online resources by downloading the pdf below:

Home treatment allows affected individuals and families to rely less on hospital care by increasing independence and promoting early treatment of bleeds. Home treatment can decrease costly and time consuming emergency room visits, and allow for a more normal home life with preventative (prophylactic) treatment.

This booklet, Home care – The road to independence, describes how home care can empower you to have control over a bleeding disorder. Taking such a road requires clear directions and signposts along the way. It is a road that can be safely navigated… with the help of guides on your journey—the members of the comprehensive care team at the hemophilia treatment centre (HTC). They are experienced in caring for people with bleeding disorders. A close partnership between the patient and the team at the HTC is the key to successful home care.

You can consult the online resources by downloading the pdf below:

Booklet

PowerPoint presentation for workshop – Part 1

PowerPoint presentation for workshop – Part 2Workshop guidelines

 “It is difficult to convey how chronic pain totally invades and affects all aspects of your life.
It is a constant inescapable entity. And it is difficult to make others understand. Everyone has endured pain, but not the kind of pain that you must live with 24 hours a day, 7 days a week, day and night.” 
– a 50-year-old man with hemophilia

This eloquent statement was made by a person with hemophilia interviewed during an informal survey on the impact of pain. It reinforces the message that pain experienced by people with bleeding disorders is not well understood, assessed or treated. Forty percent of the people interviewed reported having pain all the time. Children also have pain and often have difficulty describing the level of their pain. Many adults, especially those with chronic joint damage, say that pain is the major element affecting their quality of life. Yet it is only recently that attention is starting to be paid to this serious problem.

The most common reasons given for not taking medication are that…

pain isn’t considered bad enough
side-effects are a problem
access to a pain specialist is difficult.

The goal of this booklet, Roadmap for managing pain, is not to provide all the answers on pain management. Rather, it is intended as a guide, showing some of the different routes to take, some of the signposts along the way and, hopefully, destinations which provide some comfort and relief.

Just as importantly, it aims to encourage open discussion of pain and to help people realize that suffering in silence is not the best way to cope.

You can consult the online resources by downloading the pdf below:

Booklet

PowerPoint presentation for workshop

Has this ever happened to you?
It’s 10:00 pm. Your child with hemophilia fell earlier in the day and now he has awoken in tears and his ankle is swollen. You have no factor at home to infuse. You rush to the nearest hospital emergency department and sit in the waiting room… and wait, and wait, and wait. When your child is finally examined, the doctor says, “I’m not sure your son’s ankle is bleeding. I’ll have to run some tests.”

Or, does this scene sound familiar?
It’s the middle of the night. You have Type 1 von Willebrand disease and you are having a bad nose bleed. You are unable to control it at home and so you go to the emergency department. The waiting room is full and the triage nurse does not seem to think your nose bleed is serious. So you wait. You know that you need an injection of desmopressin (DDAVP). When you finally see the doctor, he/she prescribes packing and refuses to call the hematologist on call. The nose bleed continues.

Unfortunately, stories like these have occurred all too often and many people with bleeding disorders have experienced firsthand the frustrations and anxiety of accessing timely and appropriate care for themselves or their child in the emergency department. This booklet, Navigating the emergency department, contains practical suggestions of things that can be done to prepare and make things go more smoothly for you or your child. Emergency department visits will be necessary from time to time, despite your best efforts to prevent injury. However, being prepared and well informed about your bleeding disorder, before ever stepping into the emergency department, can pave the way to a successful visit.

You can consult the online resources by downloading the pdf below:

Travelling is often an adventure and sometimes a challenge. In today’s world, people with bleeding disorders work in all professions and many practice self-care. Therapies are easily transported, and specialized emergency care is now available in many parts of the world. Due to these major advances in care and treatment, there is no longer any reason to pass up the opportunity to travel.

Having a bleeding disorder does, however, pose added challenges, for example:

getting through airport security and border crossings with factor products, needles and syringes

packing bulky clotting factor concentrates

ensuring you carry medical information in case of a medical emergency

knowing where to find medical care in a faraway place

arranging for special travel needs

obtaining travel insurance.

With the right planning these challenges can usually be overcome. The goal of Bon Voyage! Travelling with a bleeding disorder is to help people with bleeding disorders reduce the risks of travel so they can enjoy their adventure to its fullest.

You can consult the online brochure by downloading the pdf below.

Booklet

Powerpoint presentation for workshop

Workshop guidelines

This module also includes a very useful wallet travel card that contains information about how to access care and treatment when away from home. Among other things, and especially to help globetrotters, the wallet card contains 16 key phrases in English, French and Spanish that can be used in an emergency situation. Here’s an example:

I am having a bleed. Please give treatment with factor concentrate (or desmopressin) immediately and investigate later.

J’ai une hémorragie. Veuillez m’administrer du concentré de facteur (ou de la desmopressine) sans tarder et investiguez ensuite.

Estoy sangrando. Adminístreme de inmediato concentrado de factor (o de la desmopresina) e investigue después.

Please contact CHS or your hemophilia treatment centre if you wish to receive a wallet travel card.

Do NOT follow this link or you will be banned from the site!