Treatment soon for woman diagnosed with rare, incurable disease

Following a series of advanced magnetic resonance imaging (MRIs), Stacyann Van Rossum, the single mother who lost her ability to walk, was last week diagnosed with a rare neurological disease that affects the motor neurons.

The diagnosis was given by Dr Amarnauth Dukhi and his team at the Georgetown Public Hospital. Dr Dukhi and Stacyann spoke with the News Room on Monday.

He disclosed that already, the government is trying to procure the necessary medication which will prevent the further progression of the disease.

Stacyann, a resident of Mocha, East Bank Demerara, was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease. The doctor said he has treated at least three persons with this disease previously.

He explained that the team of doctors ran tests on Stacyann and found that she has a neurological disease that was progressing quickly.

“The loss of motor control of the muscle is one of the leading factors in diagnosing ALS or motor neuron disease,” he explained and said that by looking at her history and age, it was conclusive that she has this disease which has no cure. But by the use of riluzole, a medication, further progression of the disease can be prevented.

“What can be done is the use of this medication to just allow her to stop progressing at a fast rate and improve her quality of life. These types of patients you need to find ways so they can be comfortable living with these conditions,” Dr Dukhi said.

He explained that they will start with the drug usage and then add more medication and therapy to her treatment. Dr Dukhi said the treatment will be a lengthy one but it should help her to be less uncomfortable. Importantly, Dr Dukhi said regardless of which part of the world she sought this treatment, the riluzole medication would be used.

Stacyann said she is more confident now that she knows her diagnosis and is confident also in the team of doctors who are treating her.

She lost her ability to walk in 2020 and despite numerous visits to several doctors over the years, they were unable to diagnose the reason.

The woman heavily relies on her two sons – 16 and 10 years old- for assistance around the house.