Cystic
Fibrosis (or CF) is the UK’s most common life-threatening
inherited condition. It affects vital organs in the body,
especially the lungs and digestive system, clogging them
with sticky mucus, which makes it difficult to breathe
and digest food. Every week 5 babies are born with Cystic
Fibrosis and 3 young lives are lost, of which 90% are
from lung failure.
Because
CF is a genetic condition, it occurs when a baby inherits
two copies of the faulty CF gene – one from each
parent. Many people express surprise to hear that 1 in
25 of the population are actually carriers of one CF gene.
Being a carrier of does not cause any health problems
but does mean that if you conceive a child with a partner
who is also a carrier, there is a 25% chance that the
baby will be born with Cystic Fibrosis.
Children
and adults with CF require an intense daily regime of
treatments involving daily physiotherapy, lots of medications
and close monitoring by a specialist hospital team. When
babies are born with CF their lungs are 100% healthy.
However the sticky mucus produced in their lungs encourages
repeated chest infections, which over time can cause damage
and progressive deterioration of lung function. Most babies
born with CF are also unable to digest any fat unless
they are given special enzymes with their food.
In
Scotland, Northern Ireland and Wales and some areas of
England, screening of all babies for Cystic Fibrosis is
carried out through the newborn “heel prick test”.
It is hoped that soon newborn screening will take place
nationwide so that the condition can be diagnosed very
early in a child’s life in order to give them the
best care possible from the outset.
Treatments
for CF have developed very significantly over the last
fifty years and are continuing to do so. In the 1930’s
a baby born with Cystic Fibrosis was only expected to
live a few months. Now the average life expectancy is
approximately 31 years and children born with CF now have
a much better future ahead of them. There are currently
very exciting developments being made in the field of
gene therapy research for Cystic Fibrosis. This holds
the possibility of a much brighter future for those children
being born with the condition today.
However
we are still many years away from saving lives through
gene therapy, and even if the research is successful,
it will not help those whose lungs are already permanently
damaged. In the end-stages of Cystic Fibrosis, the only
remaining hope is a double lung transplant. Transplantation
is only ever considered as a last resort in order to save
a patient’s life.
Little Kayley Keir is 11 years old and has Cystic Fibrosis.
She was severely affected by CF from the time she was
born and by the age of 8 her lungs were so badly damaged
that her only hope was a heart and lung transplant. After
an agonising two year wait, and when hope was fading fast,
a donor was found and Kayley’s life was saved. A
year on she is happy and well, loves playing football
and has just started at secondary school, a day that her
Mum Jackie never thought she would see.
However 50% of those waiting for lung transplants, like
Kayley was, will die before a donor is found due to the
UK’s chronic and increasing shortage of organ donors.
In the UK today there are currently over 7000 people today
waiting for an organ transplant and 166 of these are children.
My
close friend Emily Thackray (22) also has Cystic Fibrosis
and has been waiting for a double lung transplant for
19 months. Between us Emily and I have now lost 18 friends
with Cystic Fibrosis who were waiting for transplants
but whose chance never came due to the chronic shortage
of donors.
As
a result of this, and with time rapidly running out for
Emily, we decided to launch the Live Life Then Give Life
Campaign in March 2006. The campaign aims to encourage
more people to think and talk about the issue of organ
donation, and to sign the NHS organ donor register. The
response to the campaign has been fantastic. Celebrities
including Kerry Katona, Trisha Goddard, Sharon Osbourne,
the GMTV crew and Bill Bailey have all given us their
support. National and regional media coverage has also
been great and we have been really touched by the support
of the public for what we are trying to do.
Emily
and I know only too well that her time is now very limited
but we are determined to do all we can to remind people
that if they would like to pass on the Gift of Life to
others one day, it is essential that they do something
about it today by signing the NHS Organ Donor Register
and telling their next of kin. It’s something that
only takes 2 minutes to do but that could one day save
and transform the lives of up to 9 others.
Each
day brings us closer to finding a cure for Cystic Fibrosis
that will save the lives of the babies being born with
the condition today. In the meantime organ donation remains
the only hope for the most severely affected children
and young adults and I’m determined to do all I
can to raise awareness of this through the Live Life Then
Give Life Campaign.
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For
further information about Cystic Fibrosis, please visit:
www.cftrust.org.uk
For more information on organ donation and the Live Life
Then Give Life Campaign,
please visit: www.livelifethengivelife.co.uk
To sign the NHS Organ Donor Register please visit: www.uktransplant.org.uk
or
telephone 0845 60 60 400
