Wednesday, June 12, 2024

Rare disease renders woman unemployable

Gomolemo Marumo, was diagnosed with Multiple Sclerosis (MS) in 2013 after living with symptoms from 2011. 

The 40-year-old woman from Nata village says she can’t find employment because of the MS symptoms that include extreme fatigue, double vision and spasms.

Marumo studied a Bachelor of Arts in Humanities majoring in Environmental Science and Theology & Religious Education.

According to the NHS, Multiple sclerosis (MS) is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance. It’s a lifelong condition that can sometimes cause serious disability, although it can occasionally be mild. 

Marumo says MS has really affected her everyday life. “I can’t function like a normal person,  I’m always in pain and tired and this somehow limits the way I function and it’s really painful because people don’t understand what I am going through because I do not look sick,” she noted. 

She says she can be fine now and sick the next minute and it is for this reason that she has decided to raise awareness about MS to teach people about it and also reach out to other MS patients.

Marumo explains that MS is a very rare condition and she believes there are some people living with it that are not even aware because it is expensive and difficult to diagnose. “Before I was diagnosed I didn’t know anything about this condition because it is hardly talked about in this country as it is unknown,” she said.

She says she has been raising awareness about MS since 2022, and this year she decided to commemorate World MS day with a walk with the help of Active Hub fitness club and presentations by specialists. 

She hopes that next year they will be able to go around the country raising awareness about this condition with help from the government. 

Marumo reveals that she is still trying to get the Ministry of Health on board but hasn’t been successful yet as this is a very rare condition. She says the ministry doesn’t even have booklets she can use in raising awareness but she remains hopeful that they will in future jump on board to assist her raise awareness about MS.

Marumo says MS is incurable and only symptoms that are present at the time can be treated.

She also notes that most MS medication is not registered in Botswana, which means they have no access to that medication and says ordering it outside is a challenge.

She says even though symptoms and support may vary, they need psychological help. “We need psychological help because most MS patients can’t cope with the way our bodies work and anxiety of the future,” she added.

Marumo says she might not look sick but that doesn’t mean she is not and appealed to the community to be supportive.  

Dr Alexis Soto Lavastida, a Neurologist at Nyangabgwe Referral Hospital says Multiple Sclerosis is a common disease in high-income countries and has a heterogeneous prevalence worldwide. 

He says it is mainly prevalent in in North America at a rate of about 140/100,000 population and Europe at a rate of about 108/100,000 population, and less prevalent in East Asia and sub-Saharan Africa at a rate of 2.2/100,000 population and 2.1/100,000 population, respectively. 

Dr Alexis explains that Multiple Sclerosis presents with a broad range of symptoms reflective of the multifocal lesions of the Central Nervous System and that the severity and wide range of symptoms are reflective of lesion burden, location, and degree of tissue injury.

He however notes that the exact cause of MS is unknown but says factors involved in the disease development can be classified into three categories: Immune factors, Environmental factors and Genetic associations.

He says stopping smoking, eating a healthy diet with vegetables and fruits and exercising can help prevent MS and other diseases. 

According to Dr Alexis young women between 20 and 40 years with some of the modifiable risk factors, genetic disorders associated with immune system abnormality are likely to suffer MS.  

He says depending on the state and stage of the disease development, MS patients can be treated and managed in both public and private health facilities in Botswana. 

Ministry of Health Chief Public Relations Officer, Dr Christopher Nyanga says although there are no jobs specifically reserved for people suffering from MS, no one in Botswana can be disadvantaged or discriminated against on account of their health condition, if they qualify and are able to deliver on the job at hand.  

Dr Nyanga says there is no specific budget devoted to MS but the ministry receives a budget every year to, among others, help bring down the high burden of Non-Communicable Diseases (NCDs) including Multiple Sclerosis. 

He says the Ministry stands ready to support and fund any initiatives meant to address all conditions affecting Batswana including MS.

“People living with Multiple Sclerosis can therefore, be assisted in health facilities across the country. Referrals can be made to more specialized health facilities, in the event there is need for such,” said Dr Nyanga.

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