Thursday, June 5, 2014

2014 American Brain Tumor Association Patient and Family Conference

I just read the email announcement of this year’s ABTA “Patient and Family” conference:   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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