Wisdom of a Ferocious Patient Advocate

Celeste Lee, cherished wife, sister, daughter, mother, faithful friend, and passionate patient advocate, died at age 51 from the autoimmune disease vasculitis, surrounded by family and friends, both near and far.  Celeste was a longtime member of the Vasculitis Foundation and a founding member of the North Carolina VF Support Group.

Celeste was a life-long patient advocate and patient with Granulomatosis with polyangiitis and ESRD (end stage renal disease).  At the age of 17 Celeste was diagnosed with Wegener’s which shut down her kidneys the summer before her senior year of high school.  The kidney involvement transitioned her from a college-seeking young woman into a lifelong ESRD patient.  In 1983 Celeste attended college as a student on hemodialysis.

In 1986 Celeste received an amazing gift of life, a transplant.  However, in 1995 when the kidney failed, she was devastatingly transitioned back to dialysis.  Celeste created an exceptional life with her mental fortitude and unparalleled passion for patient and family-centered care.  She dedicated her professional and personal life to employing the principals of patient and family-centered care: dignity and respect; sharing information; being an active participant in one’s health.

Over her 30 years of patient advocacy, Celeste has bestowed us a wealth of wisdom, insights, and hope.  Her professional experience is interwoven with her personal health journey culminating into knowledge that carries tremendous impact for those who had the privilege of interacting with her.

Tokens of wisdom from Celeste Lee to carry with you as a patient, a caregiver, a community member, and advocate:

Engage in your health: be the driver
You’re beginning your life-long journey with chronic illness, and you have two choices: be a passive observer, allowing others to take the driver’s seat, or be the driver, taking control of your life when you can, experiencing the adventure, and setting your limits.

Mental Fortitude: Once the candles have burned down, it’s time to move on.
The constant management of an illness can wear you down. When it gets the better of me, I know that it’s time to seek support by talking with a life coach, a counselor, or a friend; also, I focus on finding meaning and purpose in life. Sometimes I light candles, fill the bathtub, climb in, and have a good cry. Once the candles have burned down, I know that it’s time to move on. http://www.rsnhope.org/health-library/article-index/aging-in-dog-years/

Isolation: When feelings of isolation linger, dance.
Chronic illness can make us feel isolated—utterly alone—even when we’re surrounded by family and friends. For most of us, this feeling of loneliness is transient, but if it lingers, there are ways to deal with it:

  • Volunteering
  • Dancing (even cleaning the house to your favorite music to get you moving and smiling)
  • Laughing
  • Loving (embrace the miracle of love wherever you find it: in a spouse, a child, or a pet; in friendships or strangers who need a hand or a compassionate glance)

Sum of things:  joy
To sum it up— my life is about the joy I have derived in sharing time and connecting with you.

Celeste was the keynote speaker at our 2013 International Vasculitis Symposium in Philadelphia on July 12 of that year.  She later was interviewed for our Extraordinary Video Series and discussed her journey with vasculitis and her work as a patient advocate.  Watch the video here.

Celeste Benedict Castillo Lee Memorial Scholarship

To honor Celeste and the impact she has had on the vasculitis community, the Vasculitis Foundation and the Vasculitis Patient-Powered Research Network (V-PPRN) have established a scholarship for a newly diagnosed vasculitis patient to attend the 2017 International Vasculitis Symposium.

The Symposium will be held at the Chicago Marriott O’Hare in Chicago, Illinois, June 23-25, 2017.  The scholarship will cover symposium registration, travel, and lodging for a patient and companion.
Click here to access the application.

Vasculitis Foundation

The Vasculitis Foundation is the international organization for patients with vasculitis, their families, friends and the health care professionals who care for them.


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