Cristina

Today we had our check up with the neurologist and she said that the FDA did not approve the Omaveloxolone, is this right? but I believe there was a letter signed by patients and relatives asking for this. We live in Spain but I try to follow the updates. Thank you so much

My daugther, 14 years old, just had her echocardiogram and electrocardiogram the other day and was told she was steady from last year, wall thickness of 12mm, which is in the upper range of normality. If it rises to over 13mm she would require medicine. And during adolescence is when it grows usually.

Hopefully it’ll stay like this always 🙂

Cristina

I talked to my daughter’s school and they showed understanding to her situation. She also had back surgery (80ºcurve) back in july and she is still able to take the elevator to go to her class and even use a pilow for her chair. She is also exempt from doing gym class as her balance is not good and they are doing different sports that she is not…[Read more]