Itchy, itchy and new challenges ahead

The last week has seen site reactions reduce in size but they are still extremely itchy and driving me to distraction! In fact I am up in the night once again with ice packs in the hope that this will help. In addition I now have a rash coming up independent to the injection sites. At the moment I am not sure if it is related but I will get it checked out to see. The bone pain continues but comes in flares when it is much worse.

I was invited to travel to London on Thursday last week to take part in a new campaign to raise awareness of rare conditions. Mick came with me as I find it really difficult to travel on public transport on my own. We travelled to Chester initially and then caught the train to Euston Station. The train journey was a treat and only took two and a half hours but the seats were very uncomfortable so I was glad to arrive. Travelling through the underground was very difficult for me as I felt as though I was holding everyone up. Everyone seemed to be in such a rush and because of my feet I was hobbling along with great difficulty and the escalators were very difficult to navigate. Anyway I made it but was relieved to get to the hotel and have a rest before dinner.

The following day we went to the meeting to discuss the new campaign and I will tell you more about it as time progresses. This is going to be a unique opportunity to challenge mindsets and inspire others living with rare diseases

#HPPandMe #Hypophosphatasia #asfotasealfa #strensiq #metabolicsupportuk