Minutes:
November 8th, 2006, 7:00 pm
Group Organization
Representatives
|
Dr.Kherani: |
|
Faculty/Medical Advisor to the
Uveitis/OID Support Group |
|
Phyllis Jensen: |
|
Children and Family Counselor
Co-Facilitator of the Uveitis/OID Support Group |
|
Saletta Hindemith: |
|
Parent Representative and Web contact
Co-Facilitator of the Uveitis/OID Group |
| |
|
|
Introduction
Our meeting started
informally at 7:00 pm as everyone was introducing themselves,
and their children with Uveitis, to each other. Refreshments,
including treats for the children, were served and enjoyed by
the kids.
Three families with
uveitis children attended the meeting:
Tara, 11 ½
yrs old
Rosanna, 10yrs old
David, 12 yrs
old
The children got
along well discussing all their surgeries and were excited to
meet others like them. They distributed their emails and sat
ready to be part of the meeting.
Saletta Hindemith:
Support Group Update
Saletta began the
meeting at 7:30 pm. with an overview of our mission as a support
group and the importance of advocating awareness. She would like
to work with CNIB and develop an educational package for every
ophthalmologist’s office. It would include information on
how to access CNIB services, handouts about the Uveitis Support
Group, and the Boston Newsletter etc. Handouts, including a copy
of the next current Boston Newsletter were distributed to the
group.
Dr. Amin Kherani,
Medical Advisor
Uveitis/OID Support Group
Dr. Kherani spoke to
the group and answered questions:
-
Dr. Kherani noted
that there are three other centers in Canada working with
Uveitis; Toronto, Montreal and Vancouver and he would like to
connect with them somehow.
-
Discussed how
medications available for Uveitis/OID are more readily
available in terms of treatment. He said the medications they
begin with are usually prednisone forte drops/or oral pills
(steroids) and the second line is Methotrexate and other
agents, including some biological agents. Some medications but
not all are currently funded. Funding needs to be available
for patients to access whatever medications are needed when
they cannot tolerate the less expensive ones.
-
He talked about the
importance of working with a rheumatologist in the Uveitis
clinic to develop a treatment plan. Treating Uveitis is not a
one doctor situation. We need Rheumatologists and
ophthalmologists working together.
-
Dr. Kherani
informed us that the Calgary Health Region has been approached
for a $400,000 grant to support a Uveitis clinic with a full
time RN and Rheumatologists and Dermatologists working
together in a comprehensive program.
Parents offered to
write letters in support of the grant to help develop Uveitis
medical treatments properly in Calgary.
They currently have 2
fulltime adult Rheumatologists. The adults with Uveitis are also
very keen to learn more about the disease.
-
Dr. Kherani made us
aware that uveitis is more prevalent than what we thought.
It’s just not as well known as diabetes, or macular
degeneration. He currently has about 200 uveitis
patients and noted that with continued communication to his
patients about the support group it will ensure future growth.
We discussed how the
web is a great resource and can foster international standard of
care.
We discussed the
upcoming Alberta Ophthalmology Conference in February. One of
the topics is Uveitis. It would be a good idea if this support
group could share a table at the conference possibly with CNIB.
There was a
discussion about fundraising.
It is becoming
difficult and costly to set up a society in Canada.
Stanley Smith with the University Eye Foundation, which is run
by ophthalmologists, is willing to help with setting up a fund
for fundraising, assistance and medications, research,
conferences, etc.
Phyllis Jensen:
CNIB, and Co-Facilitator, Uveitis/OID Support Group
-
Noted that CNIB is
for people with vision loss.
-
Discussed what her
role is as counselor for families and children.
-
Discussed group
camps and activities for children.
-
Discussed early
intervention for pre-school children and how school boards
offer help in schools but sometimes we have to advocate for
our children. At this point many educational institutes are
not aware of outside assistance for people with vision loss.
-
Discussed availability of aids, computers, equipment and
the library.
-
Noted that starting as a small support group and developing
it as we grow can be an advantage over beginning as a large
group.
Final Note:
A discussion followed
and it was suggested that everyone work on ideas discussed
within the group for the next meeting. They were reminded to
check their emails for thoughts from parents present at the
meeting. In the meantime, doctors advocating for our group and
distributing our website information to all uveitis patients is
a great opportunity to reach people.
The meeting adjourned
at 8:45 pm
Parents mingled for
15 minutes and distributed some emails and
pamphlets/newsletters.
