-
Cristina replied to the topic Reata Pharmaceuticals – Omaveloxolone Update #3 in the forum FA Research, Scientific News, & Clinical Trials 1 year ago
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
-
Cristina replied to the topic How often do you see a cardiologist? in the forum Living with FA 2 years, 2 months ago
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
-
Cristina replied to the topic Accomodations at School in the forum Living with FA 2 years, 5 months ago
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]
-
Cristina posted a new activity comment 2 years, 5 months ago
Thank you so much!!!
-
Cristina became a registered member 2 years, 5 months ago
Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an impor…
[Read more]