/ 31 January 2022

A future in Uganda where kids with rare diseases can play and grow

Special School For The Disabled
School for the disabled. Copyright: Kopano Tlape GCIS, CC BY-ND 2.0

Daniella Akellot’s research on gluteal fibrosis, a condition that limits the amount of movement in sufferers’ hips, has contributed to the development of a basic surgical procedure that has proven successful for children.

Akellot, 33, is a research coordinator at CoRSU hospital – the Comprehensive Rehabilitation Services for People with Disability in Uganda. Akellot brings a unique perspective to the field of disability research. 

At the age of 28 you were diagnosed with Ehlers-Danlos syndrome (EDS). Can you explain what that is?

With EDS, I miss a certain gene that contributes to the building of collagen. Growing up I’ve always been called a weakling. I walk sluggishly, I was never good at sports. I would fall all the time. That’s why I have so many scars on my face, my chin and my legs. But, I’m adventurous so I would end up climbing trees. But at the end of the day, I would go home crying with a new wound every day.

In Africa, girls are supposed to carry jerry cans of water, but I couldn’t do that. I would get tired doing minimal things. When I finally got this diagnosis, I’m like, ‘Okay, this is what’s happening. My joints are flexing more than they should be and that’s why there’s so much pain.’

Ehlers-Danlos Syndrome is a rare condition. It’s not the first thing that comes to doctors’ minds when they’re diagnosing such issues. For years, I would go to the doctor, he would just give me painkillers or antihistamines to help with allergies – they’re one of the complications of EDS.

Because of your condition, CoRSU hospital is now studying EDS. How far has the research gone?

When it came out that I had EDS, people were seeing me with braces and asked what was going on. These were the plastic surgeons, the residents, the orthopaedic surgeons.

And at the time that I got an ankle sprain, the orthopaedic surgeon was perturbed why I was taking so long to heal. Sprains take one month to heal and I was taking six months. Because I had read so much about it, I had to educate him about tissue and why people with EDS have prolonged healing.

People are misdiagnosed for years, some of them are being disbelieved. They say they have pain in certain parts of the body, but when they do the body scan, nothing is wrong. As the EDS society, we are trying to raise awareness, not just in the community but especially among doctors who are the ones supposed to identify, diagnose and help treat us and help us manage our conditions.

You are passionate about girls’ education and have raised questions on issues of cultural norms that prohibit girls from accessing education. How important is girls’ education to you?

My experience as a girl child in Uganda is going to school, and seeing my friends not being given access to school. The girls in the rural areas who couldn’t go to school because they’re having babies too early. I’m so privileged that my parents are pro-girl education. My dad put everything into educating me.

Growing up, I didn’t like to do housework. My excuse was that I would go to the library to read my books. My parents, just understanding that and allowing me to go to the library, it made me who I am today. But for many girls, they would not. You’d be caned and told, throw away your books, focus on the kitchen. I believe every girl needs an opportunity to just be herself.

You say that your focus is to make a difference in people’s lives and that seeing people walk out of hospital healthy gives you satisfaction. What are you doing to achieve this? 

In my research we are looking at a condition called gluteal fibrosis. It’s mainly in eastern Uganda where children have dimples in their buttocks. In some cases, those dimples are extreme, in that it affects the range of motion of the hips. So, you find that children sit with their legs apart. We went to a school in 2018 and found 46 children with that condition, out of which 26 were girls. For girls, our society trains us to be decent. So, a girl will kneel but her legs are apart. And that stigmatises her in society. She’s ridiculed. We partner with other organisations globally to provide the surgeries. We’ve discovered a surgery [for gluteal fibrosis] that was developed in Uganda and it works for the kids. So, what they do is cut out the fibrous tissue that causes the buttock muscles not to be flexible. I want to see a child or an adult go through surgery and they’re walking the next day. And they can say, ‘I can play, I can get a job now, I can date, I can get married.’
This piece was produced by SciDev.Net’s Sub-Saharan Africa desk and can be found at https://www.scidev.net/global/role-models/qa-my-medical-colleagues-learn-from-my-disability/