HPP and Me

“ Every day with HPP makes 20 feet feel like 20 miles”.

Last week saw me meet up with the Amazing Rudy Study team at Oxford Botnar Research Centre. The Rudy Study is a leading light in research into Rare and undia...

Yesterday marked one hundred injections of ‘Strensiq’ to help alleviate the symptoms caused by Hypophosphatasia.

Did you know, 1 in 17 people in the UK will be affected by a rare disease at some point in their lives?

The piece of art below was created by me in #encaustic wax is inspired by my experiences of living with a rare disease called #Hypophosphatasia. #HPP. Little...

Each of the 17 Changemakers have been working with artists from around the UK, who have created 17 pieces of art that represent the stories

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

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

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 enjoying Disneyland ...

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.