NGO calls for support for patients with rare diseases

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Nthatuoa Koeshe

LESOTHO has thirty one rare diseases affecting a significant number of people, a situation which calls for support for the affected people and their families, the Rare Diseases Lesotho Association (RDLA) has said.

The RDLA is a non-profit organisation established last year to help patients affected by rare diseases access lifesaving treatment, receive better diagnosis, care and support services in an effort to reduce mortality.

In an interview this week, the RDLA Chairperson, Nthabeleng Ramoeli, said the rare conditions found in Lesotho include Autism or Autism Spectrum disorder which presents a range of conditions related to social skills such as repetitive behaviors, speech and nonverbal communication; Lupus and Hydrocephalus, which she described as the buildup of fluid in the cavities deep within the brain.

“We assist all people affected by rare diseases to access treatment, care and support for improved health and quality of life. Our work is focused on support advocacy and engagement between those with the ability to prevent, treat, provide care and support for patients and families affected by chronic and rare health conditions in Lesotho,” Ms Ramoeli said.

Ms Ramoeli explained a health condition was considered rare when it affected one person in a population of 2,000 people globally.

“Rare conditions are usually genetic mutation and not contagious although they can be genetically passed on from generation to generation,” she explained.

In partnership with medical researchers and other health professionals in the country and beyond, the association is able to understand more about the rare conditions to inform designing of their advocacy programmes.

“We work closely with the Ministry of Health and get assistance from the Mayo Clinic in the United States and in particular Dr Paldeep Atwal.”

The organization has also partnered with Rare Diseases South Africa; Ehlers Danlos Syndrome Society from UK and Genetic Alliance South Africa.

Through the support they get from partners, Ms Ramoeli explained that they are able to provide assistance to families who may not know where they can get medical help such as transplants. “So far we have assisted 30 patients and one of them was a serious case of a patient who needed a kidney transplant.”

Ms Ramoeli said rare diseases represent a large medical challenge due to limited services, when it comes to some of the conditions.

“They are life threatening and chronically debilitating conditions which require specialized and costly medical care,” she said.

 

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