Group Organization
Representatives
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Dr.Kherani: |
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Faculty/Medical Advisor to the
Uveitis/OID Support Group |
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Phyllis Jensen: |
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Children and Family Counselor
Co-Facilitator of the Uveitis/OID Support Group |
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Saletta Hindemith: |
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Parent Representative and Web contact
Co-Facilitator of the Uveitis/OID Group |
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INTRODUCTION:
Our meeting started informally at 7:00 p.m. People introduced
themselves and their children to the group. We had refreshments and
treats for everyone. Due to construction problems in the area people
were arriving until 7:30 p.m.
CHILDREN WITH UVEITIS:
Tara and Rosanna, along with other siblings, were making a card
for another child, David. David is 12 and is recovering from surgery
he received a few weeks ago. He was disappointed that he was not
ready to attend the meeting due to his surgery. To cheer him up we
will send him the card along with a gift that Rosanna purchased
during the week.
During the fall meeting the children will discuss and write their
stories on how they deal with Uveitis. We will also take a photo of
the group and post the pictures on the website.
DR. LINDA JACKSON:
Calgary Optometry, Hunterhorn NE
Dr. Linda Jackson, the
eye doctor, made a referral to Children's Hospital for a specialist
to see Rosanna after she diagnosed her with Uveitis. Dr. Jackson has
been active in supporting our group and has encouraged me to
circulate a pamphlet on awareness. She has seen many patients with
Uveitis and recognizes the need for awareness. She was not able to
attend our meeting this time but has offered a donation to our
society which she would like to send in a few weeks. Stan Smith who
is in charge of the EYE FOUNDATION (a non-profit organization with
University Medical Research by Foothills Hospital) is willing to
have any monies donated set aside for our Alberta Uveitis Society.
My goal is to meet with him personally so I can be clear on how to
collect monies people want to donate in the future.
DR. KHERANI:
Dr. Kherani was planning
to attend but was unable to as he was out of town until May 10. I
was aware that the possibility of him working late that night would
make it difficult for him to attend. We waited until 8:00 p.m. and
continued with topics.
SALETTA HINDEMITH:
Saletta gave an update on our
previous meeting and passed a copy of the minutes and agenda to
everyone as well as the Spring Newsletter from Boston. She noted that
we were expecting a few more to attend but due to the construction
problems a few had difficulty in finding the meeting place.
Saletta suggested that we provide maps with directions for the next meeting.
She discussed the pamphlet
we are working on and hope to deliver to offices in the fall. She also
discussed the sponsor, Lux Biosciences in New Jersey, USA, presented
the layout and received feedback from everyone. Saletta handed out
information on Lux Biosciences and what it does as our sponsor and
the medications they are working on for Uveitis.
She announced that Dr. Rabinovitch from Ontario is willing to help out in
anyway to advocate awareness and that he will be listed on the website as a
contact from Eastern Canada. Dr. Rabinovitch comes well recommended and many from eastern Canada
have been directed to him when the group is contacted for
help.
INTRODUCTIONS
Our new adult Uveitis patients were
introduced:
Cherry Yuen
Danielle Houlden
DISCUSSION:
We turned to casual
discussions and Cherry and Danielle relayed their stories.
Discussion went on between everyone attending including family
members for 1 hour.
We all learned from both
women. They discussed how to ask questions when visiting doctors,
how to understand the information they receive, how and when to be
more aggressive in finding the answers and how to get referrals to
visit a specialist they want to see.
Daneille Houlden gave
everyone insight from a nurses prospective on how to deal with many
of the issues in the medical system.
TOPIC OF WHAT THEY NEEDED
FROM US AS A SOCIETY
I turned the meeting over
to Phyllis to discuss how she and CNIB services can help.
PHYLLIS:
Children and
Family Counsellor - CNIB
Phyllis discussed:
-
Independent vision
specialist could be our next meeting topic …on HOW TO COPE WITH
FLARE EPISODES?
-
Transportation
issues…bus travel
-
Living in Home
-
What to do during those
episodes and how to deal with it…reach out to others.
She discussed the
individuals who can help us and we should consider having them as
guest speakers for next meeting. Something we will do for fall.
FINAL NOTES:
Ron Hindemith noted that
support is what everyone needs. He encouraged us all and reminded us
that no one minds helping out when someone is having treatment or
surgery and needs extra help driving or doing the simplest everyday
things. That is why we have a group and to be aggressive in our
needs. We need to make sure even as parents and husbands attending
this meeting to help the patients get the proper treatment and
understanding in order to function normally in society. The families
and friends are a big part of the Uveitis patient’s life.
Next meeting would be in
the fall, October/November, and we will have a guest speaker dealing
with everyday life and how to cope with temporary vision problems.
MEETING ADJOURNED AT 9:30 P.M.
New patients exchanged emails and phone numbers. Everyone is
willing to help in anyway with the group. It was great to see more
connections.
