News concerning MTS
Knowledge is power. The more we - patients as well as relatives - know and understand in view of MTS, the less anxiety gets the chance to prevail our day-to-day life which is only paralyzing. Thats why we attempt to collect and share information: specialist articles, congress contributions and of course personal experience.
So we need your help. Kindly send us all info you have at hand so we will be able to make it available here and hopefully support many more people.
Our first concern after diagnosis was that the children will go blind or lose their ability to walk or - even worse - die at a young age.
The Five Ws - key questions as to who/what/why/where/when cannot be answered (yet), that’s what makes MTS so unpredictable and for us so hard for us to cope with.
From the information exchange with Hollie, a mum from the US, we have learned that a study is currently conducted in the U.S. (EPI-743) and a symposium will take place in Phoenix in 2020 exclusively on mitochondrial diseases. Hollie will be there and hopefully get answers to her questions concerning the disease and possible supportive therapy (intake of coenzyme Q10). All info available to date can be found on this site.
A congress in Poland in 2018 presented a case study showing that MTS is not inevitably combined with going blind.