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If you are not inclined to write your whole story and you are doing well, please just describe those things that were most important to your wellness and recovery.
How have you responded to all of the above on an emotional, psychological and spiritual level?
Have you used any particular source of sustenance or support that you would like to mention to others?
Tell about the results of treatment (including improvement or lack of improvement and time span involved; problems encountered with treatment or medication.
What helped? What hindered?
Current status with regards to treatment, medication, and therapies?
What was the health history or life style prior to diagnosis with Amyloidosis?
By whom are you being treated now? (local hematologist-Oncologist, at a regional hospital, etc.
Where did you grow up or live for extended time periods? Were there any environmentally stressful conditions in these places, such as, nearby manufacturing plants, nuclear power plants, waste disposal operations, refineries or any sort of noteworthy contaminating conditions
in your home, nearby or at your place of work?
Tell us about yourself or your loved one who has been diagnosed with Amyloidosis. Who will begin to listen to us if we do not tell each other who we are and what we have experienced and learned along the way.
What advice would you give to others who are about to travel a similar route? (Including matters emotional, spiritual, social and financial … or whatever)
What advice or feedback would you give your doctors and other medical practitioners and advisors?
What is the worst of it? What is the best of it?
Family Members and Caregivers: In order to assist others, if you are writing this narrative on behalf of an Amyloidosis patient who has died, please share circumstance of his/her death (i.e., during bone marrow transplant, due to infection, post surgical, was it expected or
unexpected, etc.)
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