Hypophosphatasia HPP and Me

First things first. Amazing. Suddenly my injection site reactions are much improved. Can't believe it after three months of severe...

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 looke

My feet have given me problems since infancy but by now the tendons in my feet are degenerating

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...

The first month is up and it has been quite challenging. Initially I was pretty stressed about the process of injecting and how I would...

Wow we had a great time on holiday but I am now totally whacked! It was a great joy to see both our grown up children and grandchildren...

All the injection sites are reacting within one day now.

This last week on Strensiq has been challenging. Not only have I been exhausted for the whole time the injection site reactions have really

'Metabolic Support UK' were our advocate during the initial stages of getting 'Asfotase Alfa' approved via the Managed Access Agreement.

Today was my final day with Wendy. All was going well. I drew down the medication and then tried to remove the needle ready to attach the...

Slept well once again but not for so long. By this morning I had very low grade slightly raised red patches on my first two injection...

Can't believe it. I went to bed at 10.00pm and slept util 9.45am! Didn't get up once in the night - this is unheard of. I had to rush...

Well last night I just couldn't face going to bed as I was pretty wound up about the events of today. Thoughts running through my mind...

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

At age 60 and one day I have been approved for 'Strensig'. I have had symptoms since birth but only received my diagnosis at 51, after year

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...