Melanie WilliamsJun 2, 20202 minI’m over 200!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...
Melanie WilliamsFeb 29, 20203 minRare Disease Day 2020“ Every day with HPP makes 20 feet feel like 20 miles”.
Melanie WilliamsFeb 14, 20204 minRudy Study - Patient Lead Research - Get InvolvedLast 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...
Melanie WilliamsJan 31, 20201 minI have done 100 jabs!Yesterday marked one hundred injections of ‘Strensiq’ to help alleviate the symptoms caused by Hypophosphatasia.
Melanie WilliamsJan 25, 20201 minI am Number 17Did you know, 1 in 17 people in the UK will be affected by a rare disease at some point in their lives?
Melanie WilliamsJan 24, 20201 minI Am Number 17The piece of art below was created by me in #encaustic wax is inspired by my experiences of living with a rare disease called...
Melanie WilliamsJan 23, 20201 minI am number 17Each of the 17 Changemakers have been working with artists from around the UK, who have created 17 pieces of art that represent the stories
Melanie WilliamsJan 20, 20201 minWoopee!First things first. Amazing. Suddenly my injection site reactions are much improved. Can't believe it after three months of severe...
Melanie WilliamsJan 15, 20201 minRoad TripToday 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
Melanie WilliamsDec 23, 20192 minZapped with ESWTMy feet have given me problems since infancy but by now the tendons in my feet are degenerating
Melanie WilliamsDec 3, 20191 minNo jet - but still jet lagged!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...
Melanie WilliamsNov 27, 20192 minItchy, itchy and new challenges aheadThe 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...
Melanie WilliamsNov 19, 20191 minDistraction TechniquesReal gnawing aching that has needed some serious pain relief and heat and ice.
Melanie WilliamsNov 12, 20191 minA 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...
Melanie WilliamsNov 4, 20191 minDay 25Wow 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...
Melanie WilliamsOct 20, 20191 minWeak 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
Melanie WilliamsOct 13, 20193 minAll by Myself! Day 6 on Strensiq (Asfotase Alfa) and 'Metabolic Support UK Conference''Metabolic Support UK' were our advocate during the initial stages of getting 'Asfotase Alfa' approved via the Managed Access Agreement.
Melanie WilliamsOct 11, 20191 minDay 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...
Melanie WilliamsOct 10, 20191 minDay 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...
