On Social Media, Sickle Cell and Running in Buganda

A little learning is a dangerous thing;
drink deep, or taste not the Pierian spring:
there shallow draughts intoxicate the brain,
and drinking largely sobers us again.
-Alexander Pope

After my unfortunate incident with Airtel’s Twitter handle where my answers on the Airtel sponsored Kabaka Sickle Cell run were anything but convincing, Airtel’s PRO department reached out to me to set the record straight on their involvement in the activities. I can say it’s a good thing I asked and Airtel were gracious enough to call and explain things further.

There are lessons to be learned from this though. My Twitter conversation happened on Wednesday morning and as you can see in the responses, the Airtel social media person seemed to second guessing himself, albeit confidently. I got agitated when the news came on later that night and one key person in the Buganda kingdom said something to the effect of spreading sickle cell, like it were whooping cough. I went to Facebook a little distraught and shared my earlier conversation.

It’s interesting the social media play here. On Twitter, the issue passed with the wind. On Facebook, it got quite a number of responses and actually led to the Airtel media team calling me up to apologise and offer me more info which I will also be gladly sharing in a bit.

When Airtel’s people called me, namely Charity Asiimwe and Faith Bugonzi, I certainly got a clearer and better articulated understanding of what they were doing. Let me share a bit.

The run is an initiative of the Kabaka Foundation and has several partners which include Airtel.

The Kabaka Foundation is an Non Governmental Organisation run by the Buganda Kingdom leadership. The policy making and top management body of the Foundation is the Board of Governors (Trustees), which is chaired by the Kabaka. Part of the work they do is (with the help of the Ministry of Health) identify and contribute to charitable projects that benefit not only the public in Buganda but in Uganda as a whole. One of their focal areas is health. For the last three years their main focus has been Fistula. The main beneficiary of their efforts which include the Kabaka Run has been Kitovu Hospital, a reputable Fistula treatment centre.

Kitovu hospital carried out health camps on awareness in different parts of the country and identified patients who were treated free of charge at the hospital. Accountability is available at the hospital.

Airtel has since 2014 supported the Kabaka Foundation in its efforts. In 2014 they offered up to 100,000,000 UGX towards the Kabaka Run and later handed over a cheque of 70m in 2015 towards the fight against Fistula.

This year at the launch of the Kabaka Run the Kabaka Foundation with the Ministry of Health identified Sickle Cell as an area needing focus. Sickle cell prevalence is highest in Northern (18.6%) and East-Central (16.7%) Uganda. In some places in Uganda it is as high as 45%.  It is an area not only needing sensitisation but those affected need better medication and access to better treatment centres.

According to Airtel’s Faith, “proceeds from this year’s run will go to the Sickle Cells Foundation of Uganda towards building a ward at Nsambya. Their dream is to have a specialised place where sickle cells patients can go for treatment, consultation etc. which currently we do not have…” Part of the plans also include having health camps to educate the populace more and carry out free screenings.

I asked Airtel genuinely concerned because the condition is something I know very well. So it is good to know it is more than a publicity stunt (which it did look like from the original responses).

Sickle Cell does need more information.

It is a genetic condition that affects red blood cells, causing them to be sickle or moon shaped instead of round.

This affects their capacity to carry and transport oxygen efficiently in the body something that causes painful crises, breathing complications, among other things.

You do not spread it like you would cough. The highest likelihood of passing on the disease is when two people with the trait have children. It is not guaranteed that when those two people meet they will always have children with the disease. So, testing is needed. Treatment is needed especially for children because they are under the highest risk.

Efforts have been made to cure the disease although most are risky and very expensive. I know of two people who’ve been cured of it. A teenager in France whose DNA was reengineered and Mariam Mulumba who had a successful bone marrow transplant. For now treatments like hydroxyurea are being tested. Without the cure though, people with it cope with pain treatments, prophylaxis (antimalarials), monthly antibiotics (for prevention of infections) and healthy eating and living.

Certainly Ugandans need to know more about it and we can say that the Kabaka Run is one way to do this. If you need a reason to run for the Kabaka, do it with hope that your contribution will assist patients get better treatment and better facilities.

You probably know someone who has been affected by the disease.

That said, it is a call to the Ministry of Health to pay more attention and do more.

The point in this post was two-ward – learn before you teach, run for a good cause.

For information about the condition, read here.

Cheers.

 

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2 thoughts on “On Social Media, Sickle Cell and Running in Buganda

  1. Thanks for this, Jo! For speaking out against something that didn't seem right and being gracious enough to listen back from Airtel!

    Often, we get lost in the FOMO of it all and fail to know or even learn about the causes that we are supporting!

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