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AS I LIVE & BREATHE

A Woman's Journey With Rare Disease

Tag Archives: rare disease research

11.22.17
by Nikki

Remembering Last Thanksgiving

I posted this to another social account.  But I felt it was worth sharing here:

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Standard | Posted in blog entries | Tagged blogging, chronic illness, chroniclife, healthcare, LAM, lung disease, lung transplant, lymphangioleiomyomatosis, rare disease, rare disease research, rare diseases, transplant, transplantation, TSC, tuberous sclerosis complex | 1 Comment
07.21.16
by Nikki

My Dry Run Was Also A Donation Dress Rehearsal

My dry run on July 2 was also a good test to figure out the process of notifying my LAM research team about donating my old lung tissue & organs to research into my rare diseases.

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Standard | Posted in blog entries | Tagged chronic illness, chronic life, disability, healthcare, LAM, lung disease, lung transplant, lung transplantation, lymphangioleiomyomatosis, medical research, organ donation, organ donation awareness, rare disease, rare disease research, spoonies, tissue donation, transplant, transplantation, TSC, tuberous sclerosis complex | 1 Comment

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