Caution for rare disease patients

PEOPLE living with rare diseases face many difficulties in getting the diagnosis and care they need. These difficulties are now exacerbated by the Covid-19 pandemic.

Many people with rare diseases have chronic multi-systemic dysfunctions, including immunodeficiency, respiratory and neuromuscular compromise, and are particularly vulnerable to Covid-19.

While the fight against Covid-19 is piling pressure on our limited healthcare resources, including intensive care facilities, it is important that care and support for people living with a rare disease are not compromised.

Equitable access to medicines and intensive care facilities for people with rare diseases should be ensured.

As we have seen in many countries fighting Covid-19, there is discrimination against aged persons when health resources are under pressure. This could easily be extended to people with co-existing rare diseases.

Front-line health professionals should seek advice on a given rare disease and involve a patient’s carers and the treating clinical teams in their treatment and care plan. This is because there are thousands of rare diseases, making it impossible for any frontliner to be familiar with all of them.

Many rare disease patients have to travel long distances, often across state borders, to attend clinics in tertiary centres located in Klang Valley. While we fully support the movement restriction to curb the spread of Covid-19, we would like the authorities to facilitate visits of these patient to the clinics for treatment.

On their part, people with rare diseases, their families and carers should be aware of their increased vulnerability to Covid-19. They should observe stricter self-isolation protocols and avoid unnecessary outings.

Everyone should practise physical distancing, wear face masks and wash hands regularly to prevent the spread of the virus to other people, especially vulnerable groups. Such self-protective measures are particularly important for people with rare diseases and their families/carers.

This approach should continue until a Covid-19 vaccine is available. And when it becomes available, the vaccine should be given to people with rare diseases as a matter of priority due to their higher vulnerability.

Patients and their families and carers should only follow accurate and reliable sources of information and be careful about receiving advice through social media.

There are also official channels, such as Talian Kasih (15999), which they can contact if they are feeling stressed, lonely or uncertain about what to do.

If and when appropriate, digital health technology such as virtual clinics for routine health surveillance should be considered to reduce the chance of exposure to the coronavirus.

Indeed, telemedicine is a useful form of communication to make triage decisions on degrees of urgency, to convey concern and to determine when their most important needs can be met.

It is our wish that all rare disease patients will come out of this pandemic unscathed.

RARE DISEASES ALLIANCE FOUNDATION MALAYSIA

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