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14
Focus | Autumn 2010
Lakhbir
leads the
way
Lakhbir Kaur, who works at the
Foundation Trust as an equality and
diversity liaison officer, recently attended
a worldwide haemophilia conference in
South America where she raised awareness
for a charity she supports.
Lakhbir Kaur and her husband, Balvinder Singh Nazran, whose stall won first
prize at the Volunteer and Charities Fair held during September’s Hospital Open
Week in a competition judged by the Foundation Trust’s Board of Governors
Lakhbir, has been carrying out voluntary
work with children suffering from this lifethreatening
condition since 1996.
During the summer she flew to Buenos Aires
in Argentina to attend the International
Congress of the World Federation of
Haemophilia where she also gave out
information about her charity work.
In the past, Lakhabir worked with the
Foundation Trust’s former head of
haematology, Dr Parapia, but when he
retired she decided to go it alone.
“Helping children with haemophilia is
something that I am very passionate
about,” said Lakhbir, who originally comes
from Jullandar Cantt, a city in the northern
Punjab region of India.
“I originally became interested in
haemophilia when I was asked to help with
a research study at the BRI in early 1995
to find out why Asian patients were not
attending their appointments.
“Then Dr Parapia started fundraising for the
twinned centres which Bradford Teaching
Hospitals still supports in India today and I
got involved from there.
“Since then, my charity work has
continued, to the extent that when Dr
Parapia retired, I decided to support
the charity ‘Networking of Haemophilia
Camps Project’ to develop the already
existing camps in rural India in the hope of
extending them nationwide.”
Since then Lakhbir has raised £1,000 to
fund a new camp in India.
In England, children with haemophilia
are given regular injections of factor 8, a
clotting agent which helps their blood to
clot, but in India this medication is rare and
expensive resulting in the death of boys
Q:
before they reach adulthood. Factor 8 is not
widely available in rural India.
Now Lakhbir plans to contact haemophilia
centres across England to ask them to donate
their spare Factor 8 injections which are close
to expiry before she leaves for the camps.
She then hopes to take the medication to
the boys’ education camps in India and if
the children have a bleed during their stay
in the camps, the doctors or specialised
nurses on site will administer the injections
free of charge.
Doctors, nurses, physiotherapists and
volunteers from the UK also accompany her
on trips to treat the 100 boys who attend
each three to four day camp.
What is haemophilia
Haemophilia is an inherited bleeding disorder,
where essential clotting factors required for
blood to clot normally are lacking.
These clotting factors are proteins that work
with platelets (specific small blood cells)
to allow the blood to clot. They help the
platelets to stick together to plug cuts and
breaks.
As the blood does not clot normally, bleeding
episodes last longer, bruising occurs after
minor knocks and bumps, and it is not
uncommon for spontaneous bleeding to arise
with no known obvious cause.
Most sufferers have haemophilia A where
the clotting factor V111 is absent and there
are three levels of severity; mild, moderate or
severe.
Signs and Symptoms include:
• Big bruises
• Bleeding into muscles and joints, especially
the knees, elbows, and ankles
Is there anything else I can do to help stop the spread of infections
Factfile:
Lakhbir plans to organise forthcoming
fundraising events in Bradford to raise
money for the camps which will go towards
the boys’ food, accommodation and
activities like swimming and sightseeing.
”I also counsel the patients and this gives
me an insight about how lonely they feel
and how it must be to live with the stigma
which is attached to this condition in
India,” she said.
“These camps are vital as the boys talk
about their haemophilia and learn from
each other, which helps build their
confidence and normalise their situation.”
Anyone interested in supporting Lakhbir’s
work can contact her on 07947 120314.
• Prolonged bleeding after a cut, tooth
removal, surgery, or an accident
• Serious internal bleeding into vital
organs, most commonly after a serious
trauma
• Bleeding in the brain can lead to very
serious complications after only a single
bump.
Treatment
The main treatment for Haemophilia A
and B is factor concentrate therapy. This
is either given as a prophylaxis therapy
(‘preventative’) or ‘on-demand therapy’,
(stopping bleeding when it occurs). There
is no way of permanently increasing or
replacing the clotting factors.
In the UK, those affected by severe and
moderate haemophilia A are given clotting
factor regularly to try to prevent bleeds,
pain and joint damage. Those affected by
haemophilia B are usually given treatment
twice a week. Children often use factor
concentrate more quickly and therefore
need more regular injections.