HPP is a long-term condition that requires coordinated healthcare interventions and education. Patient self-care is a significant part of managing this chronic disease. Care plans involving sharing knowledge, responsibility and peer support with health care professionals (HCP), family, friends and caregivers are essential.
To effectively manage HPP, a whole system implementation is required. Community, provincial and national social support networks, partnerships with the education system and integrative care with a range of relevant HCP occupations such as endocrinologists, pediatricians, orthopedics, occupational and physical therapy, family physicians, dentists, geneticists, pain specialists and dieticians, who are willing to act as partners or coaches, are key. Relevant activities, on-line resources, and a learning community that promotes knowledge building and sharing which are verified and relevant to Canada, are indispensable. These may reduce healthcare costs and/or improve quality of life for patients and caregivers by preventing or minimizing the effects of HPP, usually through providing knowledge and skills that enable a sense of control despite symptoms.
Please check back for ongoing initiatives and suggested resources. Currently we are pleased to share the following links:
NEW INFORMATION ABOUT DENTAL BENEFITS
Patients with HPP up to the age of 18 who have Manitoba Health coverage can apply for funding for dental benefit coverage under the Dysplasia qualifier of the Cleft and Palate Program. Patients who live in North Western Ontario, have an Ontario Health card and are routinely referred to Winnipeg specialists can also apply. Adults can also be seen on a case by case basis.
Soft Bones Canada will continue to research and share options that may exist in other Canadian provinces and territories.
CAGC (Canadian Association of Genetic Counsellors) https://www.cagc-accg.ca/?page=225
Equine Assisted Therapy encourages relaxation, development of muscle tone, coordination, confidence, and well-being. https://en.wikipedia.org/wiki/Equine-assisted_therapy
Aquatic Therapy – relaxation, exercise, physical rehab. https://en.wikipedia.org/wiki/Aquatic_therapy
Canadian College of Medical Geneticists Accredited Centres: https://ccmg-ccgm.org/accreditation-of-centres2/ccmg-accredited-centres.html
Canadian Public Health Association’s Chronic Disease Tool kit portal and current projects: http://www.cpha.ca/en/programs/chronic-disease.aspx
Public Health Agency of Canada’s Chronic Disease portal for information, initiatives, programs and strategies: http://www.cpha.ca/en/programs/chronic-disease.aspx
Active Living Alliance for Canadians with a Disability enables Canadians with disabilities to lead active, healthy lives. http://lin.ca/collections/active-living-resources-canadians-disability
Government of Canada services/financial benefits to assist patients with disabilities and their families. https://www.canada.ca/en/services/benefits/disability/index.html
Find an Occupational Therapist: https://www.find-an-ot.ca/
Nurturing Assistance Program – work under the direction and in the presence of the parent; help to bathe, feed, change, carry, nurse, “cuddle,” and play with a child http://www.disabilityliving.ca/nurturing-assistance-helps-parents-with-disabilities/
The National Benefit Authority: Helping Canadians With Disabilities http://www.disabilityliving.ca/