October 30 is #HPPawarenessday. What does this mean for you?
For some, it means nothing other than being more aware of this rare bone disease. And maybe realizing that person who is a little short, walks a little funny or looks a little different might be suffering from HPP or another disease. Or maybe if you are feeling like making a difference - it means making a $1 donation at www.SoftBones.org
For families like ours with HPP - we proclaim our mission to find a cure. We have a treatment which is a huge stride, but we need more scientists studying HPP to better understand the role of ALP be in the body. We need physicians to listen and care about learning about HPP and how the textbook ways they learned to treat patients may not apply. We need more studies to better understand HPP in adults -- and to justify that the pain is real -- and not something we are making up in our heads.
83.3 - our rally cry for the world - the International Statistical Classification of Diseases and Related Health Problems (ICD), a medical classification list by the World Health Organization (WHO) - that means #hypophosphatasia. We have a number dedicated to our disease at last - now it's time to put that number in the history books.
There are so many #HPPHeroes out there who are fighting along with us. Today we cheer them on in their quest to make a difference.
Let's put Soft Bones out of business!
For some, it means nothing other than being more aware of this rare bone disease. And maybe realizing that person who is a little short, walks a little funny or looks a little different might be suffering from HPP or another disease. Or maybe if you are feeling like making a difference - it means making a $1 donation at www.SoftBones.org
For families like ours with HPP - we proclaim our mission to find a cure. We have a treatment which is a huge stride, but we need more scientists studying HPP to better understand the role of ALP be in the body. We need physicians to listen and care about learning about HPP and how the textbook ways they learned to treat patients may not apply. We need more studies to better understand HPP in adults -- and to justify that the pain is real -- and not something we are making up in our heads.
83.3 - our rally cry for the world - the International Statistical Classification of Diseases and Related Health Problems (ICD), a medical classification list by the World Health Organization (WHO) - that means #hypophosphatasia. We have a number dedicated to our disease at last - now it's time to put that number in the history books.
There are so many #HPPHeroes out there who are fighting along with us. Today we cheer them on in their quest to make a difference.
Let's put Soft Bones out of business!
