Thursday, 24 May 2012

Action Duchenne Scottish Parliament Lobby

Busy gathering my thoughts in preparation for the Action Duchenne 2012 lobby of the Scottish Parliament in a couple of weeks.

Points to be presented this year include:

- Provision of DEXA Scan services - section only was offered again but we have opted for a fully body scan to ensure full and properly comparable results are recorded. Note: partial scan results received at our last visit were not comparable with those from the full body scan at Logan's first appointment and so we will be insisting on full body scans from now on. How widespread is the offering of partial scans and are parent aware of their shortcomings?
- Relative scarcity of information and advice received from UK teams when compared to that provided to a friend in the US. DMD is a devastating and progressive disease and it is difficult enough just dealing with it, never mind having to constantly push for care, information and advice including scans, supplements, the use of antioxidants and so on.

Lots to do . . . .

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