THOUGHTS FOR PATIENT AND FAMILIES
DIAGNOSED WITH A.M.Y.L.O.I.D.O.S.I.S.
(The first letter of the sentence starts with a letter from the word amyloidosis)
Always pray and never give up.
Minister to others as they go through this process of learning about amyloidosis, in time you will be able to do this.
You need to ask questions and always look for support from those who have traveled this road ahead of you, they are willing to share.
Live one day at time, because no one knows all the answers and you will have many questions.
Oneness is not an option with this disease process, you will need lots of love and support and understanding.
Investigate with all the Centers of Excellence that have study this disease and don’t let your local physicians tell you they know the answers because most of them don’t unfortunately.
Do educate yourselves as much as possible without getting in over your head.
Only take the information that is important to you personally and your situation because each situation is different, that is one of the mysteries of this disease.
Stay in touch with the amyloidosis support group because they have a lot of knowledge and knowledge is power.
Insist on obtaining as much information from medical staff and ask questions in order to be able to assist in your care or the patients care.
Support each other and your love ones, this is a journey that you will travel together and you will need each other, especially the patients and their caregivers.

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