Exchange of experiences
We would like to encourage persons affected by MTS (and their family members) to share their experience concerning the illness, of course anonymised.
You may take these questions to serve you as a guide:
How and when was it discovered?
How has the clinical course been to date?
Which therapies have been performed?
Do you suffer from exceptionally frequently occurence of infections?
... and there are so many more open questions waiting to be answered...
We believe that such reports can support those affected. My older son has turned 25 in the meantime - according to current subject literature the probability for him to suffer from a severe eyesight deterioration or even go blind is very high.
Thats why we were very happy when we learnt that his visual nerve is working flawlessly.
The case of our younger son raised fears concerning the possibility that his auditory nerve may lose its function any time - with him being a cochlear implant carrier, this is quite fundamental - but of course we have not been able to find an answer to it.
Of course it is also important to shake off such worrying questions and to live for the present, enjoying life to the full, but this is quite hard sometimes.
Please contact us if you want to would like to share your experiences. We are available on Skype, our ID: .....