Significant improvements in quality of life since the start of therapy
First I got infusions every 14 days. I did feel an improvement with therapy, but I felt significant fluctuations. Immediately after the infusion I was very tired, then the pain symptoms started to improve, but they had already decreased significantly a few days before the next infusion. After 16 months of enzyme replacement therapy, I switched to chaperone therapy.
Before the therapy, severe headaches and migraines were part of my daily companions. If I didn’t have a headache or migraine, I always felt like cotton wool in my head. Since the beginning of the therapy I have only rarely had a slight headache and the feeling of cotton wool only occurs with heavy exertion.
My muscles were quickly overstimulated and constantly tense, especially the tendons and fascia at the transitions to the skeleton. I had vertebral blockages almost every day and was a permanent guest at the chiropractor and also had physiotherapy several times a week to loosen my muscles and connective tissue (fascia). My whole body was under constant tension. I could no longer sit up because of the pain and could only lie on my back on a very soft surface. Since the beginning of the therapy, my mobility has improved significantly and I hardly have any blockages anymore and I can sit for a longer period of time again. I asked my osteopath about his impression: The fascia is no longer so glued together and the tissue is more elastic overall.
At the end of 2018, my cognitive abilities were so limited that I had great difficulty following conversations or formulating sentences. I had constant word finding difficulties and memory problems. All signs of vascular dementia. Since switching to Galafold, I’ve also been feeling much better cognitively.
The renal failure has not progressed further. My values remain stable.
In summary, I can say that an improvement has already occurred with enzyme replacement therapy. I’ve felt even better since switching to Galafold. I am less dependent on help and have more zest for life again.