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Learning The Basics
“As a caregiver to my 63 year-old mother, who was diagnosed in 2009
with cutaneous T-cell lymphoma (CTCL), I was informed of the
Cutaneous Lymphoma Foundation during my mom’s initial oncology
consultation. The Foundation’s website has been a lifeline for my
family through our journey. My mom’s battle is not unlike many others
fighting this disease. I remember her having these “flare ups” that
included rashes, terrible itching, pain and swelling. She was biopsied,
diagnosed with eczema and treated with steroids.
Being the caregiver to a loved one stricken by a rare disease is so
challenging. Watching my beautiful mom suffer, feeling so helpless,
so afraid of hurting her more, is devastating. I have worked hard to
do everything I can do to find resources and support to ensure that
her quality of life is the best it can be. One way I have done that is to
make contact with the CTCL-MF Listserv, an online support group
for patients and caregivers. Doing this marked a turning point in
the quality of care my mother received. I contacted the listserv with
questions regarding mom’s
fragile skin and how best
to treat her. The responses
to my questions were
immediate, so helpful and
overwhelming. I was not
alone. There were many
others willing to help, to
share their lives and personal
journeys with me, to share
what techniques gave their
loved ones relief. I gained
renewed strength, energy
and, most importantly, hope.”
Julie Garner
Atlanta, GA
Caregiver
