Interview with Ayesha Mehmood

[In Health Insight]

“I was called to be a motivational figure and I talked about life with

Thalassemia.”
-Ayesha Mehmood, official spokesperson www.thalassemia.com.pk –
Interview by Sadaf Fayyaz
Ayesha is a Thalassemia victim who has a family history of the deadly disease. She is an official
spokesperson for the website and is doing a wonderful job of creating awareness among people
on the fatal disease. The campaign was started by her late brother Salman Mehmood, who fought
very bravely till the end. Ayesha recently appeared on “The First Blast on Dawn News” and
shared some myths regarding the deadly disease. Besides this, she keeps posting updates on her
website in form of her blogs too. She also manages the blood bank, guides people
regarding blood needed anywhere in Pakistan, along with Farman Ahmed she
arrange blood camps as much as possible, she also manages content
on thalassemia blog / site and marketing about blood donation camps and
registrations.

Tell something about your education and early childhood.

I have done Intermediate in Arts, currently studying for B.A, my childhood has never been
different than any other child just because I was special I have to go for blood transfusion once
every month with my two other brothers.

When you were first diagnosed with thalassemia?

I was only six months old when I got diagnose with Thalassemia, my other brothers were already
been diagnose so it was easy for doctor to understand my symptoms.

It’s an inherited disorder, as a child what difference you felt from other children?
Well, it says the parent’s teaching are the best teaching of entire world you learn from, my
family or rather I would say my mom never taught any of my siblings to feel different from other
children, she treated us like any other mother treat her kid. We don’t have any difference, we can
study, get degrees, get married, have kids, and just a transfusion in month doesn’t stop us from
being normal.
Tell something about your website www.thalassemia.com.pk.
Thalassemia.com.pk was founded by my late brother Salman in 2003 just to acknowledge people
all around the world about Thalassemia, he wanted to share the suffering of Thalassemia from
rest of the world, later on in 2007 we formed a group called Faith (Fight Against Thalassemia) as
the need of awareness increased, we decided to arrange more blood drives and awareness camps.
Soon we will be registered by Thalassemia International Federation and Thalassemia Pakistan
Federation.
Tell something about website www.iwritealot.com.
Iwritealot.com was founded in 2009 to raise funds for the cause of Thalassemia, we use the
funds in blood drive or awareness or if we get some information about any needy Thalassemia
patient.

What treatment are you getting for it?

Thalassemia treatment is same everywhere in the world, patient have to get transfusion once or
twice in a month, depending on the hemoglobin, because of multiple transfusions patient get iron
loaded in the body and for that we have to go through iron chelation.

What do you think how is the quality of life of a TA patient?

It totally depend on the treatment and care he / she is getting, if a patient is maintaining
hemoglobin at 10 and taking proper care of his iron chelation then his quality of life is improved
and he can reach the age of 40 – 50 easily. But just a bit extra care needed.

What are the areas where TA patients need to take a special care about?

Because of compressed immune system we have to care about infections, rather I would say just
a bit care on blood counts, if they are down we might catch infection easily, but that happens in
any normal person too. So the patient of Thalassemia should be careful on his hemoglobin and
iron chelation.

Thalassemia patients can live happily, healthily, get married. Share a few lines on it.
There are few friends of mine who have done LLB, MBA, BBA, and then there are few friends
who have got married having kids, living a perfectly normal life, as I said early we just need to
maintain the hemoglobin, take proper care of iron chelation then we can achieve anything.
How can a thalassemia patient avoid his/her child from not getting thalassemia? Are there
any specific measures for it?
Basically there are two types of Thalassemia, Thalassemia Minor and Thalassemia Major. If
anyone has Thalassemia minor should get his partner tested for the Thalassemia Gene, it is
considered that Thalassemia minor shouldn’t marry another Thalassemia minor, and in
Thalassemia Major the partner must be tested and should be normal, shouldn’t carry Thalassemia
gene.
Is there any time you think thalassemia affects your life badly?
Well we are also human beings, we also do have a thing called heart and there are times in
everyone’s life where he/she get down and think over his/her life, so yes.., there are the times I
have thought that mine or my siblings life could have been better if we were not Thalassemia
patients, but then it’s the thing called ‘mayoosi’ which is haram.

Share a few lines about Salman's motivation and how he started this website work.
Salman got this motivation after we lost our elder brother Nauman, Salman had just a single
friend in his whole life and that was our brother and after losing him and they way we saw that
awareness was nil at that moment, he took the step and created this website so that no one else
lose his brother or sister ever again.

How do your colleagues and friends cooperate with you?

Well in our case friends and colleagues have been really great with us, whether it’s about blood
drive, awareness camp or it’s my up and down phase of life... they have always been there, some
help by promoting our work, some help by being there morally, some help by donating blood.

What is the most critical thing a thalassemia patient need to take care of?
It is Transfusion and Iron Chelation.
Your inspiration for continuing thalassemia awareness comes from?
It comes from my brother Salman, I don’t want to stop the cause he started, because of his efforts
we have been managed to help several people around the world, he have done a sadqa-e-jariya
and I have to continue it.., I don’t want to be unfair to him and to his memories.
What role do you expect from medical authorities to create thalassemia awareness among
people?
After a very long fight we have been managed to get the bill passed for mandatory test before
marriage in two assemblies, NWFP Assembly and Sindh Assembly, I wish and hope that they
pass the bill in two other assemblies and then get it implemented throughout Pakistan as soon as
possible.

What is your message to the readers of Health Insight?

A very simple and short message, get yourself tested for Thalassemia gene today, whether you
have a Thalassemia major in your family or not… but to save the next generation please get
yourself and family tested today.

Help us in Fight against Thalassemia – www.thalassemia.com.pk