Lessons Learned (so far)

• Trust your instinct.

• Be assertive.

• Don't assume that doctors read files. Double check.

• Do your own research. Especially with a rare disease doctors don't know everything.

• Ask for help. Let people help you with the research. My sister is head of research :-).

• Thinks outside the box. Be open for ideas from other people (those with experience).

• Ask for a second or even a third opinion (I had a fourth :-)).

• Get connected with people who are in the same situation.

• Be 100% sure that you understand what the doctors are saying. Record the conversation, sometimes you miss a part of the conversation or are doubting about what have been told.