Sickle cell: Kampala a tale of two cities. Opinions

Upper Kampala

Lower Kampala

I spent the whole of yesterday delivering the sickle cell results for those tested at Parliament last year. My interaction with people has confirmed my long time belief that Kampala is a tale of two cities.

The questions people in upper Kampala are different from what people in lower Kampala (Down town) ask.

In upper Kampala the question is "Is there a cure for sickle cell disease?"
Lower Kampala "Is treatment for sickle cell disease available?"

But what both don't ask "Is sickle cell preventable?"

Over to you.

Sickle cell children of Atutur through the lenses

Donate to Help Amullen Zalika have a successful surgery

Amullen Zalika is 13 year old girl in primary 5. She is a resident of Okobe village, Atutur Sub-County in Kumi district - Eastern Uganda. Zalika was born with sickle cell disease a genetic blood disorder. She is the 6th and last born. She was walking properly and playing like any other child of her age. One and half years ago she suffered a stroke and her left side was affected. She developed a club foot on her left foot. We identified her in August 2015 when we went for sickle cell awareness and screening at Atutur Hospital in Kumi District.
The stroke she suffered has made her life difficult. It has had emotional and physical impact on this young girl. She now misses most of the school days, she missed most days of the second term of this year due to difficult in movement. Zalika experiences pain in the knees, foot, hands, poor mobility and limited participation in both home and school activities. She now has to walk with the help of a clutch.
Zalika needs to undergo a corrective surgery and the doctors have said she can be operated on and walk again without clutches. The total costs to be incurred is 834,000 or USD 250 to cater for transport, scan, feeding, procuring clutches, consultation and accommodation. We are asking for your help and prayers in reaching this goal and to give her the smile she deserve.
You can send the money on mobile money 0779210960 or 0701042239
You can also donate here
https://www.generosity.com/medical-fundraising/help-amullen-zalika-have-a-successful-surgery
The first photo is when we identified her and the second photo after the review and start of the surgery process on Thursday last week
Thank you

Zalika when we first saw her

Zalika when she started the process of corrective surgery and rehabilitation

Sickle cell issue in Teso Sub-Region

State Minister for Teso Affairs Hon. Christine Amongin taking notes from the people during the sickle cell clinic at Atutur Hospital Kumi District on Tuesday.

The people r

Hon. Christine Amongin Aporu

eported to her the challenges they face and the excitement of having a clinic at Atutur.

They reported to the minister that some health workers in Soroti Hospital sell drugs and mosquito nets to them which are supposed to be free.

A father to two children with sickle cell disease (names withheld) told the minister that every time he goes to the sickle cell clinic in Soroti Hospital he was being asked money to see the doctor. He also said that drugs are also being sold in the hospital pharmacy. He recalled the time when he went to get mosquito nets and he was asked the price at the market, he told them 10,000 UGX. The person distributing the mosquito nets asked him to pay half the price on the market.

All services at the government hospitals are supposed to be free.

Sickle cell clinic at Atutur Hospital

Yesterday we were in Atutur to check on the progress of the sickle cell clinic we opened last September. The clinic has registered over 570 patients from the districts of Kumi, Ngora, Bukedea, Soroti, Katakwi. Yesterday there was over 20 patients who had come to the clinic for the first time. We were joined by the Minister for Teso Affairs and also the Woman Member of Parliament for Kumi District Hon. Christine Amongin Aporu. She promised to further the sickle cell cause in her region and see more sickle cell clinics opened up and equipped in every district.

Minister for Teso Affair addressing the public

Patients, Parents and caregivers

People lining to wait for their turn to see tha doctor at the clinic

Hon. Minister in the Clinic talking to the doctor in charge Dr. Sarah Asio

Evelyn Mwesigwa (in pink)  the ED for Sickle Cell Network Uganda addressing people

Edward (the head of parents) Hon. Amongin and Evelyn

Patients record books near the clinic entrance

Parents teach fellow parents