2nd Regional CML Forum

The 2nd CML forum was
held on June 25th at Casa Real, Iloilo City. The province of Iloilo is the regional center of the Western Visayas region. It is a first class, highly urbanized city on Panay island
in the Philippines. The distance from Manila (flying time is about 1 hour and
24 hours travel time by bus). No wonder, I can only count in my fingers the
number of patients who had joined our activities in Manila.

Organizing the event remotely can really be a challenge.
I banked on the support of one GIPAP patient and treating physicians for
searching the venue, food caterer and spreading the invitations to the
patients. Everyone unanimously believed in the objectives of disease education
workshops in the region. Few weeks before the event, we had a good number of
confirmed participants. The patients and caregivers were delighted to know that
a forum is planned. Sadly, we had patients/caregivers travelling by boat who
failed to come on the event due to weather forecast of thunderstorms.

The meeting started with the brief self-introduction of
participants to break the ice. This was followed with an overview of Max. I
have emphasized how much we value our partnership with patient groups and the benefits
associated with having a support group in each region. Of course, the highlight
of the day was the presentation of one of the leading hematologists in the
province about CML. She made it a point to discuss the disease in layman’s term
using the local dialect. One of the participants is a newly diagnosed patient
who came with his parents. Initially, his parents left him at home as they wanted
to shield him from “knowing the truth about his disease and hearing “sad”
stories from other patients”. But I guess, I was able to convince them on the
benefits of support group. They asked their son to follow and join the meeting.
The father asked the most questions which were gladly answered by the physician.
They were also inspired to hear the story of one patient who have survived CML
for 14 years. Another patient stood up in front to share how she live life to
the fullest with CML and breast cancer diagnosis. Her positive disposition was
very contagious.

Before the meeting ended, the group was in high spirit
and very much motivated to unite themselves. They have identified their core
leaders headed by Robert, a former GIPAP patient. Robert is a physician himself
and the Chief of Hospital in one of the government institutions in Iloilo. His
courage to disclose his medical condition was commendable given his position in
the government. Hopefully, he can be the channel of the group to raise their
voices for better access to treatment and disease monitoring.

The meeting feedback forms of the participants only
showed so much appreciation for the opportunity to learn and share experiences
with the other CML patients.

 

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