Sickle cell disease is a genetic illness widespread in Uganda. Myths persist about the disease, but one teacher in Kampala explains how she is defying the odds and showing that it isn't a death sentence.
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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