Hypophosphatasia: Advocating for the Patient
In the last of four segments dedicated to hypophosphatasia (HPP), Debbie Taillefer, President and Founder, Soft Bones Canada, speaks to Dr. Suham Alexander about the importance of creating a community and patient advocacy forum for patients afflicted with soft bone diseases.
Soft Bones Canada was created to fill the void that Debbie and other patients required when they were newly diagnosed with HPP. Soft Bones Canada works to help support and educate patients as well as to bridge the gap with medical professionals.
Dentists can play an important role in early diagnosis of the disease since the earliest signs may be premature exfoliation of primary teeth only. The burden of disease from a dental perspective is quite remarkable. Patients face unique challenges given they are missing multiple teeth – mastication, nutrition, function, speech impediments and esthetic issues which can lead to other social problems such as anxiety or bullying.