A Mother’s Resilience: Navigating the Challenges of Caregiving in the Face of Rare Autoimmune Disease

Category: Blog

Subtitle: Faye Bynum Jacobs Shares Her Journey as a Caregiver and Advocate for Her Son Battle with TTP
Byline: By Dr. Shelley Cooper
Date: August 22, 2023
Kansas City, MO – In a heartfelt conversation, Faye Bynum Jacobs opened up about
her role as a caregiver and advocate for her son, who has been battling a rare
autoimmune disease called TTP. Thrombotic thrombocytopenic purpura (TTP) is a blood
disorder in which platelet clumps form in small blood vessels. Mrs. Jacobs, a Dementia
Practitioner, and Mental Health Trainer for Trillium Health, Resources, Therapeutic
Alternatives Inc., hailing from Wilmington, North Carolina, shared her experiences and
insights with Dr. Shelley Cooper, CEO of Diversity Telehealth and Cascade Media
Group partner.
Mrs. Jacobs described how her son's life took a sudden turn during his college years
when he contracted the flu, triggering the onset of TTP. At the time, this condition was
so rare that resources were scarce, with only one in 500,000 people being affected. The
prognosis was grim, with a mere six-month life expectancy. However, against all odds,
her son has surpassed expectations, living with TTP for 24 years and counting.
During the conversation, Mrs. Jacobs underscored the importance of being an advocate
for loved ones facing health challenges. She revealed that her son's journey led her to
become deeply involved in his care, exploring various avenues to provide him with the
best quality of life. Through research, community support groups, online resources, and
diligent communication with healthcare agencies, she discovered ways to connect with
her son and help him relearn crucial skills that were affected by the disease.
One of the most inspiring aspects of Mrs. Jacobs' story is her emphasis on treating her
son as a partner in his own care. She shared how important it was to involve him in
decisions and communication, even though he faced difficulties expressing himself due
to the disease's impact on his ability to speak. This approach not only empowered her
son but also helped them build a stronger bond through their shared journey.
Mrs. Jacobs shed light on the challenges of finding suitable resources for young adults
dealing with mental health issues resulting from illnesses like TTP. Despite obstacles
and limited services, she highlighted a positive shift in recent times, possibly due to the
impact of the COVID-19 pandemic. Community support has improved, albeit gradually,
offering some respite to caregivers like Mrs. Jacobs.

Throughout her journey, Mrs. Jacobs has discovered unexpected lessons of resilience
and purpose. Her son's strength and determination have continuously surprised her,
reinforcing the value of hope and the importance of embracing life's challenges. She
stressed that being open, patient, and treating each person as an individual were key
factors in navigating the complex landscape of caregiving.
As Mrs. Jacobs continues her path as a caregiver, advocate, and voice for those facing
rare diseases, her story resonates as a testament to the power of love, determination,
and unwavering support in the face of adversity. Her insights inspire individuals to
become advocates for their loved ones and demonstrate the profound impact that a
strong partnership can have on a person's journey toward healing and living life to the
fullest. Thank you, Mrs. Jacobs for educating, enlightening and empowering our readers
about caring for a critically ill family member.

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