18-year- old Nabila Nakigozi and 23-year-old Fauzan Ssebagala are the subjects of a new documentary titled ‘Living with sickle cell disease will not kill me’, filmed and directed by Arif Sempala, a British Ugandan model. The 17-minute film follows the two siblings during a sickle cell awareness event which they organised on 10th of August, featuring one on one interviews on their thoughts, struggles, pains and also triumphs of living with the disease.
Despite what seems like a misfortune, they are doing everything possible to save as many lives as they can.
“We know it’s not about us anymore, the damage is already done,” Ssebagala offers. “Now, we are fighting to ease someone else’s suffering.”
“There’s no reason you should give birth to a child for them to go through this much pain when it can be avoided by just a little awareness,” Nakigozi adds.
Sickle cell anaemia is an inherited form of anaemia, a condition in which there aren’t enough healthy red blood cells to carry adequate oxygen throughout your body. There’s no cure for most people with sickle cell anaemia but treatments can relieve pain the disease comes with.
The purpose of Nakigozi and Ssebagala’s event was create awareness; that young people need to check their partners and themselves before going ahead to conceive, which will curb the ever growing numbers of victims, and that there’s need for more blood donation drives to save the lives of those living with the disease.
Together with other sicklers, they relayed chilling details of the pain they go through every day. Besides being in and out of hospital, they have to take up to 17 tablets daily just to stay alive. This kind of medication is also quite pricy, something many of their peers in London and Uganda can’t afford.
They aren’t letting this derail them from their goal, which is saving lives, in the documentary, they speak at length about ‘Weren’t Born Rich’, a fashion brand Nakigozi launched three years ago. With this brand, they are able to pursue their passion, which is fashion, whilst creating awareness for the disease. The brand has presence in both England and Uganda. Their message is, “If we can do it even when we are always in and out of hospital, why not you?”
As part of the brand’s awareness campaign, they are doing a #WerentBornRich challenge where one donates blood then challenges a few of their peers to do the same whilst tagging @werentbornrich. That way, you and I can join hands with them to save as many lives as we can from losing their lives to sickle cell anaemia.
The most heartbreaking part is, because of the fatigue that amounted from the hosting the event, Nakigozi ended up in hospital and hasn’t been out till today!
Watch the documentary below
To support Nakigozi and Ssebagala’s cause’ follow Weren’t Born Rich on Facebook here, Instagram here and shop their collection on www.werentbornrich.com.
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