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Rare Disease Day 2020

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

I Am Number 17

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 me not knowing what the future holds. Me trying to battle through my middle years on the right, carrying on regardless of the pain and struggles and the lady at the front is me now having the accept life as it is. The pool at my feet is intending to give a reflection of my life. The painting is called ‘Reflections’ an

Woopee!

First things first. Amazing. Suddenly my injection site reactions are much improved. Can't believe it after three months of severe itching. I'm down to one antihistamine a day. To say I am relieved is an understatement. It's been very tough injecting when you know you are going to get such a huge reaction. Everyone said this would happen after a while! Woopee! Long may it last. Mick and I travelled to Sheffield to see my Metabolic Specialist Jennie Walsh last week.

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 looke

Zapped with ESWT

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

Distraction Techniques

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

A month done!

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 react to the drug. The first two weeks I was totally exhausted and barely rose from the sofa. After that the bone pain began to set in - now possibly that could be to do with the very cold autumnal weather we have been having - who knows. The site reactions became huge during the 2nd and 3rd weeks. So much so that they were all touching

Day 25

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 and Paris. Their smiles were infectious and the excitement unbelievable. I was able to join in and see everything but only ventured onto the mildest of rides. I left the thrills to the more adventurous. Whilst away the injection site reactions have still persisted and have been huge and extremely itchy. Some have even

19 days

All the injection sites are reacting within one day now.

Weak for a Week!

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

Day 5 on Strensiq (Asfotase Alfa)

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 next one. I twisted, turned and pulled but no way was it budging. Wendy had a go as my hands don’t grip too well. She couldn’t do it either. I got some pliers and managed to get it off. Anyway it turns out the drawing down needle was the wrong fit! So glad it happened today! Teething troubles! I’d be mortified to waste a vial. All sorted

Day 4 on Asfotase Alfa (Strensiq)

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 sites but they are not itching. Today I injected into my stomach again. I learnt something today too as I stuck the needle in and then accidentally pulled it out as I tried to move my hand to push down the plunger. Fortunately it didn't fall to the floor so all was well. Obviously getting too full of myself on the 4th day! It seems to be

Day 3 on Asfotase Alfa (Strensiq)

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 around like a mad thing to make sure I'd had my breakfast before Wendy the nurse arrived. I will still eating my toast when she turned up. I think the sleepiness may be due to the medication but time will tell. Today I chose to inject into the outer part of my leg. Once again this was more stingy than the stomach area for me but not as s

Day 2 on Asfotase Alfa

I slept extremely well last night as I was much relieved after the training yesterday and then doing the injection myself. Today we ran through things briefly again and this time I injected into my stomach. Well it was much less painful - in fact I barely felt it. So far I have hardly any reaction on my skin from yesterday's injection either. So absolutely brilliant. Wendy the nurse is going to come every day this week until Friday just to make sure all is well. She is

Day 1 on Asfotase Alfa

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 about the medication "Is it going to work? Am I going to feel poorly? Will there be a reaction? Will it reduce the pain?" I was't too concerned about injecting myself but was more concerned at the size of the needle in the pack - it was about 1.5" long and chunky! I eventually went to bed at 2.00am after binging on a Jane Austen drama

Strensiq is in my Pantry!

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

Feeling Grateful

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 Hospital yesterday to have all my baseline tests before starting on Strensiq. This involved a 6 minute walking assessment to see the distance covered, weight and height, blood tests, signing consent forms and receiving information packs. I now wait to hear from the MAA (Managed Access Agreement) Health Care Team. #HPP #hypophosphatasia #managed