Ice hockey legend Bureh Salming, 71, has been affected by amyotrophic lateral sclerosis.
Those with ALS usually only have a few years left to live, but the status of research has received a clear boost in recent years.
-If you look at everything tested, the majority have been tested in the last 8-9 years, says one researcher TT spoke to.
Puree Salming He told TT in a statement Wednesday afternoon that he had suffered from ALS:
“The signs that everything was not right in my body turned out to be amyotrophic lateral sclerosis. In an instant, everything changes.”
TT spoke to two researchers who both presented a picture of a serious illness that primarily affects older adults, but a lot of research and progress has been made in recent years.
TT: What type of disease is ALS?
It is a neurological disease that affects the nerves in which patients suffer as if they are weak. It’s about nerve death, and muscles aren’t getting any information, says Carolyn Inger, associate professor who leads a research group on ALS at Karolinska Institutet.
What happens is that the muscles shrivel and breathing is affected as well. Eventually your respiratory function becomes so poor that you die.
There is no cure
TT: Why did you get ALS?
– That’s the question we don’t know yet. We know that a neuron dies, but we don’t know why it dies. Amyotrophic lateral sclerosis (ALS) is difficult to diagnose, widespread and difficult to accurately identify, which unfortunately often means that the person receiving the diagnosis has a short time, a few years, to live.
Trinidad and Tobago: What kind of medicine is there?
There is no cure, but there are treatments that slow down the symptoms, says Caroline Ingri and supported by Anton Tegest, an ALS researcher affiliated with Uppsala and Umeå Universities:
– A lot has happened in the past ten years. Many experimental drugs are reaching the patient stage today. If you look at everything tested in the last 30 years, most of it has been tested in the last 8-9 years. He says Sweden is there, as well as other countries in Europe, the United States, Canada and Australia.
‘Very hard to diagnose’
TT: Are there warning signs to look out for?
The disease often lasts for many years in silence, says Anton Tejet and continues:
– In most cases, we cannot indicate why they are affected, but for 10-15 percent we can point to a specific gene. There are early pharmacological treatment stages you can introduce, where you can stop the affected gene. It’s been shown to be effective, but there’s a lot we don’t know yet, like what happens if this treatment goes on for years. Early amyotrophic lateral sclerosis is very difficult to diagnose.
TT: What kind of support is available for those affected by amyotrophic lateral sclerosis?
All major university hospitals have ALS clinics or teams. But it is also available in some other hospitals. You can also participate in pharmaceutical studies, in Karolinska, for example, we receive patients from all over the country, not just from Stockholm, says Caroline Inger.