Andrea Barshay Williams Advocate and Author
Seeking Shelter in His Refuge…. Finding, Facing and Fighting Amyloidosis
Weston, Florida, United States
Andrea Barshay Williams has had a lifetime of excellent nutrition, supplement taking and marathon running. That’s why in 2013 when she was diagnosed with a hematological condition known as MGUS she was quite shocked. Though MGUS can progress to Multiple Myeloma or Amyloidosis, her doctor only mentioned Myeloma when he educated her. After developing a strange symptom called periorbital purpura, (which is in essence black and blue eyelids common in Amyloidosis) she began a quest to find out what was happening. Five doctors denied she had Amyloidosis; misdiagnosis and late diagnosis is unfortunately also common to Amyloid patients. In 2015 a new doctor from the University of Miami made the correct diagnosis of AL Amyloidosis.
Andrea had a successful stem cell transplant in November of 2015. She made a pledge to God that if she lived through the procedure she would do everything she could to pay it forward. To that end, she wrote a book called Seeking Shelter in His Refuge…Finding Facing and Fighting Amyloidosis
. She distributes this book free of charge. Her motivation in writing was to chart her journey and offer help and coping skills to patients new to Amyloidosis and or facing a stem cell transplant. The book also represents her personal effort to help gain more awareness and earlier diagnosis for this rare disease.
Andrea has stayed loyal to the hospital she believes saved her life by speaking to UM candidates for stem cell transplant at their monthly Meet and Greet. There she shares her experience, offering support and answering questions. Andrea is also a member of the University of Miami Patient Family Advisory Committee serving as an advisor for various process improvement projects. A new initiative to educate second year medical students about Amyloidosis has recruited Andrea as a speaker. UM has reached out to her to become an online peer counselor. Using her strengths as a writer, Andrea was asked and completed editing the UM Autologous Stem Cell Transplant Handbook. Viewing her allegiance and positive experience with UM, Andrea was selected as the patient of the year in 2017 and addressed the medical and patient transplant community at their yearly gala. She often jokes with the staff that they saved her life and now they can’t get rid of her!
Andrea had a rewarding 34 year career working as a licensed clinical therapist with difficult populations including those incarcerated, dually diagnosed, homeless, indigent, perinatally addicted, and with parents who had lost custody of their children. She stepped away from her career in 2013 but maintains licensure after being diagnosed with MGUS, which was the precursor to her 2015 diagnosis of AL Amyloidosis. After recovering from her stem cell transplant she was proud to become her husband’s caretaker through several orthopedic operations, believing it was a testament to her recovery and solidified her powerful transition from patient to caretaker. She enjoys her 5 grandchildren, swimming, and yoga. Andrea spends lots of time daily in parks spreading joy with her adorable pup, Lenny. She states she is enjoying her new normal….living well with Amyloidosis.