2013_Summer_Forum - page 1

Cutaneous Lymphoma Foundation: Making sure each person with cutaneous lymphoma gets the best care possible
Cutaneous Lymphoma Foundation
PO Box 374
Birmingham, MI 48012-0374
telephone: (248) 644-9014
fax: (248) 644-9014
is published by the
Cutaneous Lymphoma Foundation.
The Cutaneous Lymphoma Foundation does
not endorse any drugs, treatments or products
reported in this newsletter. Information is pro-
vided for informational purposes only. Because
the symptoms and severity of cutaneous lym-
phoma vary among individuals, the Cutaneous
Lymphoma Foundation recommends that all
drugs and treatments be discussed with the
reader’s physician(s) for proper evaluation,
treatment and medical care.
From the President and the Chief
Executive Officer . ............................ 2
DC Patient Networking Group ........ 3
Alive with Mycosis Fungoides:
A Patient’s Perspective: Jan Paro........ 4
A Caregiver’s Story:
Meredith Haab.......................... ........ 5
2-Day Cutaneous Lymphoma
Patient Conference Highlights.......... 6
Patient Educational Opportunities ..... 8
One Voice Against Cancer Lobby
Day 2013............................................. 9
Scientific Meetings Recap...............10
Get Involved..................................... 12
Summer 2013
utaneous Ly pho a Foundation: Making sure each person with cutaneous ly pho a gets the best care pos ible
Throughout my life, I have witnessed
so many people being afraid of their
greatness. In fact, they fear greatness
more than they fear being ordinary!
I love this quote by Bill Cosby,
“Decide that you want it more than
you are afraid of it!”
Whether what we want is a new
relationship, a successful career, better
health or just a better life, we still have
to make a decision to do so. Too many
people let fear run their lives instead
of pursuing the powerful life that they
desire. My favorite conversation to
have with folks is how to improve
their quality of life. Let’s face it; if
you have a chronic or rare disease,
it’s an even greater challenge to “live
your best life.” That’s why we need to
do all we can as patients to empower
ourselves and ensure that we have the
best care possible.
Living with Psoriasis/Psoriatic arthritis
for over 42 years, both chronic and
debilitating diseases, has taught me a
lot about how to live a life of joy. It
has taught me how to persevere and
overcome challenges, how to be my
own advocate and has helped me to
develop a strong “empathy” muscle for
dealing with people. More importantly,
it has taught me that my disease does
not define me. I have a disease, but it
doesn’t have me! My goal has always
been to live a life that I love and live
it passionately. Chronic daily pain
has forced me to become mentally,
emotionally and empathically strong.
I now teach others how to advocate
for themselves and how to live
passionately in spite of the challenges
that they face. We are always our own
best advocate.
So how do you live your best life with
a rare and chronic disease? As Bill
Cosby says, you have to “decide” that
you want it (your best life) more than
you are afraid of it.
Awareness of your condition is vital.
Finding the right “team” to assist and
support you is the foundation that
you need to navigate the rough waters
you face. Studies show that when
you have a disease that “shows,” the
emotional and psychological aspect
is much greater than having a disease
that other people cannot see. This is
why we need kind, caring people on
our team and in our lives. Lastly, we
have to persevere, which I believe
is the key to living an empowered
life. All of us have days that we are
sad, depressed, frustrated, lonely and
negative. However, becoming mentally
strong is your greatest source of power
and strength.
Awareness of the disease is very
empowering. We learn that we are
not alone: that there is hope, that
there are caring people helping to
find a cure, treatments and options.
Being diagnosed with a rare disease is
overwhelming. You don’t know where
to begin to process it emotionally,
or how to navigate an entirely new
reality. I encourage people to seek
knowledge and education. Be open to
alternative therapies. Talk to others
How to Live a Life of Joy
Tena Brown is a
patient advocate,
speaker, author
and teacher.
Tena Brown
How to Live With Joy...continued on page 11
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