Amyotrophic Lateral Sclerosis (ALS) is surely one of the cruelest diseases in existence, although paradoxically it is largely unknown to the general public. Perhaps because its causes are not fully known, nor is there an effective treatment, nor does it affect a large number of people -every year there are 2 cases per 100,000 inhabitants-, nor does it fill the pages of newspapers… the few who know about it have had someone close to them who has suffered from it or have been interested in the life of the well-known scientist Stephen Hawking, the most famous person who has suffered from or has ALS.
But today, June 21 is World ALS Day, a day to spread information about this disease, to hold scientific conferences, to appear in the media and to give the world a message: ALS exists.
Prisoner of your own body
ALS is a degenerative neuromuscular disease that causes progressive muscle paralysis until the patient becomes totally immobile. However, it does not cause any damage to brain functions unrelated to motor activity. That is to say, it does not affect intelligence or sensitivity. Neither do the senses suffer any alteration. These effects mean that the person with ALS remains exactly the same and totally aware of what is happening to him and around him, which is when many define the ALS patient as a prisoner of his own body. Hence the cruelty of a disease that, in addition, has a degenerative process that can last for years.
The only way out for ALS is scientific research where some signs of hope in treatments can be glimpsed, but for this to happen, the disease must be made more widely known and we must become aware of its seriousness. If you are interested in collaborating in a more active way, there are many ways to do it, for example through entities such as the Spanish ALS Association, although just by spreading the message you will be helping all those who suffer from it. For them, remember: ALS exists.