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More than meets the eye… spotlight on Ehlers-Danlos Syndrome

2021-02-24  Staff Reporter

More than meets the eye… spotlight on Ehlers-Danlos Syndrome
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Quite often, people who suffer from non-physically recognisable ailments become outcasts in their communities and are branded as cursed.
Many others are left without access to proper medical care due to a lack of education on rare diseases and invisible conditions.
Creating awareness towards rare diseases and invisible illnesses has become the personal battle of former Namibia University of Science and Technology student Nthabeleng Ramoeli, who suffers from Ehlers-Danlos Syndrome.

Ramoeli, who is a native of Lesotho, is the founder of the Rare Disease Lesotho Association and also a partner of the Namibian Rare Disease Alliance. The alliance is centred on creating awareness for rare diseases in Namibia.

“Invisible conditions or rare conditions are conditions that affect the body but not in a physically visible mannerism. With rare conditions, you cannot physically see anything unless you are told that the person has a hole in the heart, for example, or that they have a genetic mutation that makes their connective tissue weak,” Ramoeli said.

She explained that a person living with an invisible life-long disability may often find it challenging to convince their community or health care providers of the seriousness of their condition due to non-physically visible constraints.   

“Now, the problem with society is that people do not view invisible conditions as conditions that should be treated as disabilities, which is wrong because a disability is just a non-fully functionality of a person. Someone with Ehlers-Danlos Syndrome, which is the condition I live with, has connective tissue that does not work properly; therefore, we cannot functionally do everything properly,” she added.
Ramoeli’s condition can confine her to her bed without the ability to walk, although she does not use a wheelchair.
“Not being able to be mobile and get from one point to another is a disability –whether it is permanent or just once in a while. People with Ehlers-Danlos Syndrome cannot go running without dislocating their joints,” she said.

Public education
She added the public needs to be educated on all sorts of disabilities, especially those that are not visible to the naked eye.
 “We need to raise awareness so that people can understand that just because someone is able to talk and smile does not mean that they are not ill. I feel like it is unfair that the system is put up to only recognise that you are disabled if it’s visible. For example, that you do not have eyesight or cannot walk,” Nthabeleng said.

In 2019, Ramoeli launched Namibian Rare Disease Alliance, which is an alliance that comes together to help people suffering from rare diseases.
“At this stage, we have only been able to talk about it and raise awareness to bring it out there. With goals to go to different regions in Namibia and give one-to-one support to people with rare diseases and maybe assist in getting donors for transplants they need or access to medical care they need.”

On 27 February this year, the alliance held a meeting with the health sector to discuss rare conditions and create awareness for these rare conditions.
“We need to be more sensitive to people with rare diseases. We also need to educate health facilities to be equipped enough to handle people with such conditions,” she said.

According to the Invisible Disabilities Association in Colorado, US, an invisible disability or condition refers to symptoms such as fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments.
These conditions are not always obvious to the onlooker, although they can limit daily activities for people living with these conditions.
Speaking to this publication, Erongo-based Dr Amir Shaker said invisible conditions can be related to depression, high blood pressure, high blood sugar (hyperglycemia) and sicknesses such a TB, drug-resistant TB, and inverted anus in babies. 

“Sometimes, conditions such as down syndrome cannot be detected with the naked eye. In some cases, people can receive treatment for mental problems like psychosis or hallucination and schizophrenia – and you will not be able to detect them”, Shaker said. 
He added the ministry of health does not have a database on people living with conditions that can be classified as ‘invisible’ because doctors, who treat patients suffering from such ailments, only individually detect them. 

“Only new cases are reported to be counted in the system but old cases are not known about; only a doctor would know that he saw this many patients with this type of disability,” he added.

He also said there are enough medical facilities to treat people living with these types of conditions, while patients can see specialists.
 He said general practitioners in all districts know how to treat mental ailments. 
“At villages like Utuseb, the clinic only has one nurse, but the doctor visits this clinic at least once a month. When the nurses pick up cases, the patients are referred to the state hospitals,” he said.

Shaker explained that, in many cases, patients could appear normal even when they suffer from conditions such as psychosis and that these can only be detected when a patient thoroughly consults a healthcare giver. “For example, saying that you are afraid of the dark or hallucinations in the night. Only then can you determine what the condition is and we will treat the patient accordingly. Healthcare workers have to be kind and listen to the complaints of the patient because when they do this, they will come to know what the problem is,” he said.
If they do not take time to access what the problem is, then they will not get to the bottom of the patient’s problem, Shaker said.
He said, therefore, “healthcare workers have to be patient with people with invisible illnesses because if they do not make the time, the patient will not receive the treatment”.

The ministry runs several awareness campaigns to bring awareness to issues such as mental health – and this is done at different clinics countrywide. The campaigns mainly focus on educating healthcare workers and the public on how to treat sensitive matters and how to relay to patients.

“This campaign touches on everything, including issues like suicide or even marriage counselling, mental health, hypertension and high blood sugar (hyperglycemia). The campaigns touch on how to detect some of these conditions early and how to treat them,” Shaker concluded.

2021-02-24  Staff Reporter

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