rareDIG RDD 2021 - Hypophosphatasia, A Patient Perspective

Jennifer Boin is on the board of directors of Soft Bones Canada, a patient group focused on educating, empowering and connecting patients and caregivers about the rare disease hypophosphatasia.

Jennifer has HPP herself and like many patients with a rare disease, she felt frustrated and isolated by the lack of reliable information and support. So, together with two other like-minded individuals, they created Soft Bones Canada, which was officially incorporated as a non-profit organization in 2015.

Jennifer is also a full-time high school teacher, currently working as a guidance counsellor. She is a mother to two very active children and is married to an equally active husband.

Instagram: @rareDIG_McGill

[tcwilliams]

Thank you SO much for this video!! Especially the focus on a patient's struggle on the road to diagnosis. ❤

[miss.apprehended]

Thank you for this discussion. My ALP has been persistently low (18-26, average 21U/L) everytime I've been tested for it (7x) since Jan.2017- zinc & magnesium levels fine.
Kids used to call me glued teeth due to enamel hypoplasia problems before my Grandmother paid for braces & bonding. Dx of fibromyalgia from rheumy 3 yrs ago, but expressed to GP recently (after discovering wedge fracture or deformity of T6 he said could be congenital but didnt suggest what conditions could cause the anomaly + had a broken wrist that required surgery that would not heal after 4mos in a cast) I dont think it fits either.
Going to bring up the possiblity of hyposphosphatasia to GP..🤞he takes me seriously.