Sarah was diagnosed with Paroxysmal Nocturnal Hemoglobinuria (PNH) and Aplastic Anemia (AA) in 2014. This is the first time that she has publicly written about her experiences with her diagnosis. Sarah became involved with the AA and MDS International Foundation as a Patient Education Council member in 2017. She has written a “Story of Hope” piece for the foundation, as well as participated in a podcast about her patient journey. Sarah is passionate about writing and blogging. She aspires to work alongside Blood Cancer Organizations and Medical Professionals. She hopes to publish an inspirational memoir about her experience living with a diagnosis. Sarah continues to see her Hematologist/Oncologist at The University Of Minnesota. Sarah has earned her Master’s Degree in Psychology and lives in Saint Paul, Minnesota.
Hi Sarah,
My name is Alicia, I live in Minneapolis and my world was absolutely changed and turned upside down a week ago. I am in my 30s and had just been feeling tired, thinking it was just the business of life until I developed a petechial rash. I am a nurse practitioner and tried to down play the symptoms, but knew something was off. A long hospitalization and bone marrow biopsy later it is looking like aplastic anemia. We are still working on an official diagnosis and am in the process of referral to the University of Minnesota . I have been reading your blog and finding hope. It has been a battle to not lose myself and spirit in the midst of this. I know that there is still a hell of a battle ahead, but knowing there is some else out there living with this and making meaning out of it all is helping me take it day by day and not just utterly collapse into myself grief. I am just reaching out to hopefully seek some wisdom from you and gain a better understanding of what I may not even be thinking of yet. This is just such a terrifying and unknown time and it has been a lot of try and absorb to say the least. Thank you for the work you are doing.
Alicia
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