Tola Dehinde
I was recently invited to a black tie
charity ball , organised by the VIN Club
in support of the Sickle Cell Society
(UK). It was a beautiful night, with the
head of the Sickle Cell Society (UK)
educating us about sickle cell .
One thing I learnt that I did not know
about was that having a bone marrow
transplant or a stem cell transplant
would render the people affected by
sickle cell disease impotent. This , I
believe, is worth bearing in mind if
one wants to go down this route .
Later that evening , I was able to talk
about my life in brief as someone
affected by sickle cell disease and
there was a ‘question and answer’
session after I spoke . People came up
to me as the evening wore on and told
me my story was inspirational , that
my story motivated them and they felt
encouraged . One lady came to me and
said that as I was speaking , her
husband was asking her how old she
thought I was . She said she told him I
was in my 40 s . Well , as she told me
this, I laughed and told her that I was
well in my 50 s .
At this event , I met a lady who came to
introduce herself to me . I found her
story compelling and will like to share
it with you. I hope she does not mind .
She told me that she was affected by
sickle cell disease and if she does not
tell you, you cannot know . She
continues by telling me her story : she
said she was hardly ever ill and I was
so happy for her in my heart . Then
she dropped the bombshell, she said
she had kidney failure because of
sickle cell disease and was on dialysis.
I asked her how often did she have to
be on dialysis and she said daily . I was
like ‘what?’ She explained that she
connects herself to the machine at
home and at night for eight to nine
hours. She further told me she had a
kidney transplant last year but her
body rejected it. So , she was now on
the waiting list again for another
kidney transplant .
Hmm, you see what I keep telling you
all about sickle cell disease and its
uniqueness. Here is someone who was
hardly ever admitted in hospital but
with organ damage . I really cannot say
that I understand this disease that I
was diagnosed with as a child. Renal
dysfunction is one of the frequent
complications experienced by patients
with sickle cell disease .
What I got to understand from
speaking to this beautiful lady was that
the inner medulla could promote
sickling of the red blood cells resulting
in renal impairment.
My advice to other people with sickle
cell disease is to please look after
themselves and if you are a parent
with a child with sickle cell disease ,
make sure that they eat well , keep
hydrated by drinking plenty of water
and herbal teas and also go to
outpatient clinics or see the doctor
every three months for regular blood
tests and checkups . A blood test will
reveal if the patient has a renal
dysfunction or not.
It is so important that we educate
ourselves in order for us to be able to
make informed choices from the
knowledge that we have gained . Sickle
cell disease is very individualistic .
I have a friend whose sister is affected
by sickle cell disease and is sick from
time to time but she has never had
blood transfusion. I hear different
people’s stories about sickle cell and
some things I can relate to and some I
cannot. No one affected by sickle cell
disease has the same story to share but
in terms of treatment and
management, we can all look after
each other ; in terms of eating well ,
drinking a lot of water , taking tablets
recommended by the doctor and
looking after ourselves and not
overstressing ourselves.
I will always like to end this column
with suggestions about some foods that
are good for us to eat . Eggs are a very
good source of inexpensive , high
quality protein . More than half the
protein of an egg is found in the egg
white along with vitamin B 2 ,
selenium, vitamin D, B 6 , B 12 and
minerals such as zinc, iron and
copper. Egg yolks contain more
calories and fat.
We like our eggs in Nigeria boiled ,
fried, scrambled or prepared as egg
stew. Whichever way you like to eat
your eggs, if you have been diagnosed
with sickle cell disease , do eat eggs
regularly.