One of the ataxian / Friedreich's Ataxian parent's roles/responsibility/opportunity/curse is to communicate with doctors unfamiliar with FA. The parent may not realize it but they also have the role/responsibility/opportunity/curse to train the doctor. Wow, wasn't the doctor trained in med school?? The answer is no, not enough about a rare disorder like FA. At best they had a brief overview, one of many I'm sure.

So the parent gets to help bring the doctor up to speed. Whether it is the issue of over-hydrating in that hospital drip bottle, giving too much anesthetic, or when is a FA "heart attack" not a heart attack, the parent needs to be there for the doctor and for their FAer.

Below are educational materials for your doctor. The subject matter runs the gamut of ataxian concerns and hopes. I encourage you to offer these resources to your doctors and to require confirmation that they have spent quality time going through them. You could help your doctor, say a cardiologist, by going through the list yourself and pulling out all the heart presentations for him/her.

FARA FA Clinical Care Guidelines

FARA has gone through considerable time and expense to create a FA Clinical Care Guideline by harnessing the brainpower of 39 doctors working in groups and together to achieve consensus (or not) on a number of FA medical topics. It is well organized, finely done, and the level of confidence of their recommendations is clearly marked. Find it here: FARA FA Clinical Care Guidelines

Other Doctor Training Resources

Annual NAF Conference Presentations going back 4-5 years
Annual FARA-CHOP FA Symposiums (under "Videos") going back 3-4 years
2016 FARA UCLA Friedreich's Ataxia Patient Symposium (click on "FA Patient Educational Resources")
2018 UCLA/FARA Freidreich's Ataxia Patient Symposium
Cardiac and pre-surgery discussion with doctors for FA Patients (with links in the upper right corner)

Research

FA Research Pipeline
Friedreich's Ataxia Scientific News
Babel FAmily