Hypophosphatasia HPP and Me

Read the article here: https://www.cambrian-news.co.uk/news/easing-a-life-of-pain-through-art-510617

Doing my utomost to raise the profile of rare conditions. Some doctors only see 1 case of rare disease a year, which is why this year...

Last Tuesday saw me hit the day of my 200th Strensiq injection. I have come a long way over the last six months. From huge, painful and...

“ 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...

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...

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

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

After my visit to London last week I have slept and slept. Doing anything out of the ordinary just seems to zap all my energy and...

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...

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

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.