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  • Melanie Williams

Road Trip

Today I travel to Sheffield to visit my Metabolic Specialist, Jennie Walsh. It’s a long journey from Wales but I am so grateful to be looked after by a wonderful team at the Northern General Hospital. This will be my first visit since beginning on the medication ‘Strensiq’ (Asfotase Alfa). It will be very interesting to learn how things are progressing after just three months.


As this is a ‘Managed Access Agreement’ in the UK I have already been telephoned to respond to the questionnaires. It was all very straight forward answering questions such as how I was feeling, walking etc., I was able to report back that I am feeling less tired than I used to on a day by day basis. I can’t yet say I feel any better in pain levels but it is still very early days.


The organising of medication deliveries is fantastic. From the telephone call to delivery is seamless. Brilliantly done by Lloyds Pharmacy staff. The delivery driver will also take away the sharps box when it is full and replace it.


The allergy to injection sites has settled down quite a bit. The reactions are now only about 2cm across but still very itchy but nothing compared to the initial two months. I felt like I had been bitten by mosquitoes and resisting the need to scratch was extreme. So that is great news too.


So the New Year so far is on the up and I am very grateful for that.

#HPPandMe #Strensiq #AsfotaseAlfa #hypophosphatasia #HPP #NorthernGeneralHospital #metabolic #raredisease #rarecondition

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© melanie williams

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