In Uganda, where 20,000 babies are born with sickle cell each year, early diagnosis is critical. Myths persist that children with sickle cell rarely survive past age 5, but Tracy Katusiime is proof that knowledge and care can change everything. At 23, she’s thriving as a teacher. Her story shows why awareness is key to rewriting Uganda’s sickle cell story.
00:00It may not show on the outside, but on the inside, their blood is in a constant fight.
00:06Every breath, every step, every day is a battle against pain, fatigue and uncertainty.
00:15I'm Dr. Caroline Bundy and I'm in Kampala, Uganda.
00:18And I'm on my way to meet someone who will share their experience of living with sickle cell disease.
00:24Very many people think that sickle cell children cannot live past the age of five.
00:29When they make five years, they will tell you past the age of 12 years, but I'm 23 years.
00:41Welcome, Tracy.
00:43Thank you so much.
00:44When did you realize you had sickle cell disease? At what age?
00:48My parents realized they had sickle cells at the age of six.
00:51It was my teacher who told them sometimes I write slowly or I refuse to write.
00:57And what other symptoms came up later that made them start to feel like there was something not okay?
01:03They kept on taking me to hospital and diagnosing me with malaria, typhoid, all sorts of sicknesses.
01:09Until one big day when I fell sick and they took me to my mother's family doctor.
01:13Sickle cell is an inherited blood disorder that affects the red blood cells which deliver oxygen to different parts of the body.
01:21This can lead to frequent infections, exhaustion, and swellings in the hand and the feet.
01:28It can also affect organs like the brain and the kidney.
01:31To develop sickle cell, most of the time both parents have to carry the gene and pass it on to their baby.
01:38Before you settle down with your life partner, it's important for both of you to be tested for the gene.
01:43What does the treatment look like?
01:47It is better. It is called hydroxyurea. I personally, I take two every day.
01:51That sounds like a strict regimen. How do you manage to take the medication, especially when you were younger?
01:57Did it feel like a huge burden?
02:00My parents were very open to me, so they told me you are sick and you are supposed to take this medicine to be healthy.
02:06When I was young, the tablets were few, just one folic acid tablet and one malt vitamin.
02:12But right now, I take the VTAP supplements, I take the hydroxyurea, I take the folic acid and the Fonsida monthly.
02:21The main symptoms in sickle cell disease are anemia, which is caused by the breaking up of the red blood cells and leads to children being pale and tired.
02:30Jaundice, which is the yellowing of the skin and the eyes. And recurrent, painful, severe crisis, which affects the chest, the hands and the feet.
02:44How do you prevent the crisis? Are there any things that you do?
02:47The best thing and the favorite thing is to take a lot of fluids.
02:50I personally take three liters of fluids, two of water and one of anything, milk, juice, any other thing.
02:59Then I take my medicine on time, avoiding extreme temperatures. That is extreme heat and extreme coldness.
03:08Are there any do's and don'ts? Some things you do to make sure you don't have a crisis and some things you stay away from.
03:14Anything can bring the crisis. Taking alcohol can bring the crisis.
03:17Being in cold weather can bring the crisis. Being in rain can bring the crisis.
03:23Stress can bring the crisis.
03:25What are some of the general challenges that people living with sickle cell in Uganda experience?
03:30We have one sickle cell referrer. That is the Malago sickle cell clinic.
03:34These people concentrate more on their children.
03:37It feels like when you grow up, you have to stand on your own.
03:40We don't have any adult clinic. It restricts you from what your patients are supposed to do.
03:45It restricts you from almost everything.
03:49So you get personal challenges.
03:52You have to think that, wait, I mean, I had to be a lawyer.
03:54But I'm a teacher. Because why? I could not manage that low stress.
03:59The other challenge is about the myths.
04:01Some bosses, if you tell them you have sickle cell, they will not employ you.
04:04Let's take a question from the DW Africa Facebook community.
04:14Prince Simwaka from Malawi asks,
04:16Is it true that people with sickle cell thrive in malaria endemic areas?
04:21I wouldn't say they thrive in malaria endemic areas.
04:24Rather, they are less affected by malaria.
04:27And this is because, due to the sickle shape of the red blood cell,
04:32the malaria parasite is not able to survive.
04:35Lily Lynn from Cameroon asks,
04:38Can one manage sickle cell disease organically,
04:41given the high cost of accessing healthcare?
04:44Well, I'm not really sure what you meant by organic.
04:47If you meant the herbal remedies,
04:50we don't usually recommend to go in that direction.
04:53However, if by organic you meant proper hydration and a good diet,
04:58well, that is very important,
04:59but it should also be used in conjunction with proper medical care.
05:04For instance, medications such as hydroxyurea.
05:09Some people think that you're not able to live a normal life.
05:13What do you have to say about that?
05:15I think they're wrong.
05:16I believe I'm a living testimony.
05:18We grew up, I'm 23 years old.
05:20I know someone who is 63 years with sickle cells.
05:23So we can grow, we can actually live a healthy and better life.
05:27And we can get good jobs.
05:30I'm a teacher, I graduated.
05:32We can have kids.
05:33I'm a living testimony.
05:35Thank you so much, Tracy, for sharing your inspiring story with us.
05:40And as you've seen, sickle cell can be a silent killer,
05:44but with the proper treatment, one can live a normal life.
05:47If you or someone you know has lived with sickle cell,
05:51please share with us their story in the comments below.
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