Helping an Amyloidosis Patient Cope

I answered an e-mail from a woman, who informed me that her friend has been recently diagnosed with amyloidosis. I gave her some advice that I want to post for other people who may have a friend or family member in the same situation.

• The best thing you can do is to be there for the patient. They are probably already experiencing anxiety about the future. The patient needs to talk everything out and be strong, as hard as it may be. The period between diagnosis and evaluation was needlessly very hard for me. You cannot fear the unknown, as scary as it may be.
• The worst part of the disease is not the disease itself, or even the treatment. It is the fear of the unknown and uncertainty of ones future that causes heavy anxiety. The mental pains are as bad if not worse than the physical changes that amyloidosis causes. It causes the patient to really think about their life and confront their fears. Most people go through life being able to avoid this, but the amyloidosis patient cannot. However, this process will only make them stronger.
• I believe it is better NOT to read about the details of the disease on the Internet. The information about treatment and mortality is outdated, and will scare the living daylights out of anyone. Let her doctors give her the news on her condition, treatment options and chances of survivability.