I
just read the email announcement of this year’s ABTA “Patient and Family”
conference: http://hope.abta.org/site/TR?fr_id=3070&pg=entry
The email said “The ABTA’s annual patient and
family conference is where patients, families and caregivers come together to
learn more about the latest advances in brain tumor research, treatment and
care.”
While
that’s all true, it somehow seems to underplay the importance of the event.
Having attended the event I can tell you that I didn’t understand much of it –
the displays about new protocols, the layman explanations of the complexities
of the diseases or event which presentation I should attend. For example, this
year should I go to “Meningiomas: Update in Treatment and Care” or the session
on “Low Grade Tumors: Update in Treatment and Care”? Beats me.
Somehow
the breakout session on “Brain Tumor Symptom Management” with topics like …
- “Management of Fatigue and Sleep Disorders: What Every Patient Needs to Know”
- “Understanding Seizures,” and
- “Strategies for Coping with Cognitive & Personality Changes”
…all
seem really important.
But
when I went, the most impactful sessions were the patient presentations. The
retelling of their struggles and pain and tenacity resonated at an emotional
level that, without giving me false hope, told me that my feelings were valid,
and felt by many others.
If
you are a victim, a victim’s friend or a caregiver, take a long look at the
website an program.
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