May is International Multiple Sclerosis Month. Disability Connect asked Gerald Albertyn, head of Operations and Strategy at Multiple Sclerosis South Africa (MSSA) more about Multiple Sclerosis (MS) and the many challenges faced by the thousands of sufferers in South Africa.
Approximately how many South Africans suffer from MS?
In South Africa, it is estimated that there are 5 000 people with MS (PwMS), although this is only an estimate as no national registry of MS sufferers exists as yet.
MSSA is having discussions with a university, pharmaceutical companies and medical professionals about initiating a national project to gather information about the disease. This will lead to the creation of a national ‘register’ of MS sufferers. It is hoped that this project will start next year however it requires significant funding and this is the inhibitor right now.
What are some of the main challenges for MS suffers in SA?
Access to medical help is perhaps the biggest challenge for those who do not have a medical aid or who live in outlying areas. Whilst selected public hospitals generally do provide support, it remains a challenge for those people to be correctly diagnosed and to then receive the medication.
Of those patients who obtain disease modifying medication approved by government, these are only those MS patients who have been diagnosed with Remitting Relapsing MS (RRMS) type.
The stigma of having MS does affect a lot of people with MS and it is this problem that MSSA is trying to address.
Creating awareness about this debilitating disease is an important initiative of the Society. By raising awareness about the disease amongst the general population, it is hoped that people with MS will be more accepted and that people will be more understanding of the many issues that these people face daily.
PwMS may look fine from the outside but inside they hurt. This is generally not understood by the public or even family members.
Some of the problems that PwMS must deal with and which are not always visible are: Bladder and bowel problems
- Cognitive impairment
- Dizziness and vertigo
- Mood swings
- Walking / mobility difficulties
- Up to 90% of people with MS experience fatigue
- Within 15 years of onset, more than 50% of people with MS have difficulty walking
- Vision difficulties are common and a first symptom in 15-20% of people with MS
- Sleep problems are twice as likely in people with MS
Do most South African businesses have accommodation policies in place for people with MS?
MS is a disability for which there is no cure and many businesses do cater for these people. Wheelchair friendly parking, building access, suitable toilet facilities are common needs of people with a disability and PwMS so have the same needs.
The general human resources policies that most businesses have in place largely address the basic needs of people with disabilities which includes MS.
“For individuals living with multiple sclerosis and in employment in South Africa, disclosure, management of perceptions and providing accommodations are key aspects in the experience of multiple sclerosis in the workplace.
Finding ways to help those in employment disclose their MS diagnosis to employers and co-workers is an important avenue and next step for intervention research in this field.
There are patients who fear losing their jobs due to expected financial difficulties as some of these patients have been labelled as lazy, being drunk at work and other symptoms. There were instances where we had to call for a meeting with the employers and co-workers to explain certain behaviours patterns.
Early adjustment and adaptation to MS in the workplace is challenging and further negotiation with line-managers regarding accommodations is often required.
Employers and clinicians should focus on accommodating the needs of those diagnosed with multiple sclerosis as they arise, rather than focusing solely on the accommodations needed in the future.” 1
What are some of the additional risks for people with MS during this COVID-19 pandemic?
Many individuals with MS take a disease-modifying therapy (DMT) to control disease activity and, as is often the case with these types of disease-fighting medications, the immune system becomes suppressed, which can make the chances of infection, or complications from infection, higher.
Even those who are not on a long-term treatment for MS may be more susceptible to infections and less able to fight off illness. For these reasons, members of the MS community need to be extra careful during this pandemic to avoid becoming infected with the coronavirus and giving it to others. Adherence to the guidelines that have been widely publicized on many social and media platforms is vitally important.
Hematopoietic stem cell transplantation (HSCT) is an intense chemotherapy treatment for MS which wipes out your immune system with chemotherapy before reconstituting it using your own stem cells. It aims to stop the damage MS causes by wiping out and then ‘regrowing’ the immune system, using the body’s stem cells. Any patient should check with their treating medical practitioner should they be unsure about taking their medication during the COVID-19 pandemic.
Is Research and Development into treatments for MS a priority globally and have there been any major advances over the last few years?
Global pharmaceutical companies and other medical institutions such as universities are making significant investments into finding a cure for MS. Various treatments exist today which include oral, self-injection, IV infusions and HSCT (Stem Cell Treatment) therapies.
Is there a particular age when MS is most commonly diagnosed, and does it affect any population group or gender more significantly?
MS is commonly diagnosed between the ages of 20 and 40 and is twice as likely to be found in women than in men. In the past, it was thought that the disease primarily affected the Caucasian population, however it is becoming evident that people of other races are also affected. It is unclear to what extent this is, which is why the national registry project is of critical importance.
MSSA has published many articles on its website (www.multiplesclerosis.org.za) about the disease with links to international websites that focus specifically on MS. These articles answer many of the questions about the disease, therapies, coping strategies, and support
1. Hermine Kruger & Bronwynè J. Coetzee (2019) Living with multiple sclerosis in South Africa: how is multiple sclerosis experienced in the workplace? Disability and Rehabilitation, DOI: 10.1080/09638288.2019.1691274 NPO 007-909