Published by Pain News Network

It took over 50 years for me to be diagnosed correctly and to finally understand what I have been suffering from for so many years – sarcoidosis and Ehlers Danlos syndrome. The latter is actually something that I was born with.

Every day of my life, I have to work to get through the day in as positive way as I can muster. Yet, it is clear people still don’t understand how brave I am trying to be.  I am still in need of support. I live with two incurable, painful conditions that will keep progressing.

Despite these diagnoses, last month I was discharged by a nurse from a support organization called Vital Decisions. After taking me on as a client on their own initiative last April, it was stated that their requirements had changed to continue with a client.

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