The Icelandic MG association organized a congress at the Grand Hotel on Thursday 27.9.2024 titled “Myasthenia Gravis – Treatment & Quality of Life”. The event was free for healthcare professionals in Iceland, so as many people as possible would get information regarding MG. The idea for Nordic MG treatment guidance began two years ago in Denmark where the umbrella organization for muscle diseases (Muskelsvindfonden) held a huge Nordic MG congress. At the end of that congress neurologist professor Nils Erik Gilhus from Bergen University in Norway, thought that there should be a working group for getting Nordic treatment guidance. So the work started two years ago in Denmark and in January this year an article was published in the European Journal of Neurology (16.1.12024).
to read the article click here: Generalized myasthenia gravis with acetylcholine receptor antibodies: A guidance for treatment
In the congress in Iceland, the treatment guidance was presented by the doctors and MG patients who took part in the work.
The congress was opened by Dr Alma D. Möller, Director of Health of Iceland and around 100 delegates took part. As Dr Möller had worked as an anesthesiologist, she always had to be well-prepared when treating an MG patient. She had got a figure that in Iceland 40 MG patients are involved. However, she thought that the figure would be bigger when in Iceland there are about 300.000 inhabitants. Prof. Nils Erik Gilhus explained the work behind the guidance of Nordic MG treatment. For making guidelines more scientific research and studies are required. He also informed about the different subtypes of MG, like early onset (below 50 years old) and late onset (above 50 years old). Professor Anna Rostedt Punga from Sweden took also part in the guidance work and talked about how important exercise is for MG patients although the muscles may be weak. It is recommended to make exercise for 150 minutes per week. Also, enough sleep is important as well as a good diet including vitamins and some additives like calcium and potassium. Hormones also play a part in the outcome of the disease, which can fluctuate daily or weekly.
Prof. Henning Andersen from Aarhus University Hospital, also one of the guidance co-writers talked about new medication which is developed for MG treatment. Many different medicines have entered the market since 2014, with new treatments still in development. The prices in Nordic countries are unfortunately too high and patients should join and show the politicians how important it is for healthy young people to take part in the work society instead of being on sick leave. It is a pity that the Nordic insurance system does not cover the medication costs as in some other European countries and in the USA.
Doctor Sini Laakso from Finland presented the disease's complications, as patients might have a crises with breathing difficulties and must then be treated at the hospital. For patients below 50 years, it is proposed to remove the thymus organ by operation, as there are produced antibodies that make the MG worse. Marion Bolding doctor at Oslo University Hospital gave a presentation regarding family planning and pregnancy. There is no excuse for pregnancy, but the patient should be in a stable stage to avoid difficulties.
The voice of one MG patient was heard by Liselotte Schirakow together with the personnel trainer Inge Bjerregaard, both from Denmark. For example, horseback riding has shown to make good relax for the muscles. This has also been discovered in Sweden. The last presentation was kept by OT, PhD Lene Klem Olesen at Aarhus University regarding rehabilitation needs in adults with MG. A study had been made regarding challenges met by MG patients, but the results have not yet been published. The congress was ended by a panel with all speakers.
The event was supported by the Icelandic Disability Alliance (ÖBÍ), the Nordic Welfare Center, and some pharma companies. For more information please contact MG Félag Island at mgisland@mgisland.is.
