The Multiple Sclerosis Society of Malta (MS Society) developed over time. Today there are over four hundred patients living with Multiple Sclerosis in Malta, although not all of them are registered with the Society.
MS Society was set up on 24 October 1997. It started with a small group of patients who together with their partners or carers met up with a leading neurologist for the first time at St Philip’s Hospital. They identified the need to get together in recognition of their common disability. Treatment was very limited at the time and diagnosis was still quite rare.
This initial meeting was the start of the then newly formed MS Society.
Multiple Sclerosis or MS, as it is known, is a neuro degenerative disease, which affects the nervous system, the brain and the spinal cord. Plaques that form in these areas can cause difficulties in various parts of the body. The diagnosis of MS is through an MRI and lumber puncture to check for inflammation. This disability has no fixed pattern. One patient can lose their sight while another can have mobility issues. There is no cure but, medication is possible to slow down deterioration.
The MS Society has the following three main aims:
· To support patients and their carers;
· To provide subsidised physiotherapy to household patients or those who are experiencing difficulty in mobility, through fundraising; and
· To create awareness of Multiple Sclerosis and the difficulties faced by the patients.
Being diagnosed with MS certainly has an impact on the patient’s lifestyle creating the need for various changes and adaptations.
Multiple Sclerosis is both a visible and an invisible disability. It can manifest itself in different ways for different people.
As an MS patient myself, I suffer from many difficulties. Chronic fatigue and chronic pain are most common, followed by lack of balance, numbness and spasticity.
A personal experience I had during one of my relapses was when my legs gave way and I fell on the pavement and could not get up. The following day when my husband and I went to thank the person who helped me and explained my condition, he had thought that I traded my first coffee for a mimosa every morning when he saw me walking to work. I have many similar stories as do all the other patients I speak with. Situations like these also give us the opportunity to laugh at ourselves.
I eventually had to give up work and decided to do my bit by volunteering as a secretary of the MS Society. Similar to my story, there are patients who have discovered their artistic side and are now restoring furniture and artworks. Another who started violin lessons while many are still holding down jobs. This is very important for all patients, since support and understanding by work colleagues and employers is extremely helpful and beneficial.
MS Society offers the appropriate support to all MS patients and helps them to adapt to the new changes in a positive attitude.
The committee of the MS Society is made up of volunteer patients, most of whom are still developing their careers. The president Carmen Muscat, together with her husband and daughter, have dedicated their time to the Society, for these past 11 years.
There are many partners who look after their loved one with a disability and still try to keep down a job. Similarly, there are children who have lost their childhood as they stay home after school to look after their parent. These are all sad realities of life.
Today the MS Society forms part of the European Multiple Sclerosis Platform and is regularly updated with developments in research and medication. The Society is also affiliated with the Multiple Sclerosis International Federation which is a worldwide representation. In Malta, the Society falls under the umbrella of the Malta Health Network which support patients’ needs in many ways, CRPD and MFOPD, all representing patients with disabilities.
This October, the MS Society will be celebrating its 25th anniversary with much hope and new ideas for the future. We will be launching our new, updated website and hopefully participating in MS research. On the celebratory side, there are plans for a “get together” for the members and their friends.
MS Society is an active member of the Malta Health Network and has participated in various campaigns including raising awareness on patients’ rights and the Societal Impact of Chronic Pain. The MS Society has come a long way and we have much to celebrate. For information visit http://www.msmalta.org.mt/; contact details address: PO Box 63, Birkirkara BKR1000; Tel: (356) 7997 1024; email: [email protected]
Christine Montague is the secretary of Multiple Sclerosis Society of Malta