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Distraction Techniques

Real gnawing aching that has needed some serious pain relief and heat and ice.

Day 2 on Asfotase Alfa

I slept extremely well last night as I was much relieved after the training yesterday and then doing the injection myself. Today we ran through things briefly again and this time I injected into my stomach. Well it was much less painful - in fact I barely felt it. So far I have hardly any reaction on my skin from yesterday's injection either. So absolutely brilliant. Wendy the nurse is going to come every day this week until Friday just to make sure all is well. She is

Strensiq is in my Pantry!

I was so emotional when the package arrived I could hardly sign for it. Mixed emotions of excitement and disbelief that I am so lucky to be

Feeling Grateful

Just keeping you posted on my road to accessing Strensiq as an adult with childhood onset HPP in the UK. I went to Sheffield Northern Hospital yesterday to have all my baseline tests before starting on Strensiq. This involved a 6 minute walking assessment to see the distance covered, weight and height, blood tests, signing consent forms and receiving information packs. I now wait to hear from the MAA (Managed Access Agreement) Health Care Team. #HPP #hypophosphatasia #managed