Olga Allende and Jorge Murillo are two patients with amyotrophic lateral sclerosis, a disease more commonly known as ALS. According to the World Health Organization, ALS is the most difficult disease a person can face.
JORGE MURILLO
ALS patient
ALS is having the person you love right next to you and not being able to hold them, kiss them or say “I love you.”
With ALS, a person loses the ability to independently speak, swallow, move or breathe, though their mind remains fully conscious. Patients end up being 'prisoners in their own body.' Each patient deals with the disease differently.
OLGA ALLENDE
ALS patient
I believe that if we are here, it is for a reason. And it is not a question of examples. It is a question of the fact that, even though I don't have the kind of life I had imagined, maybe the fact that I have this disease and that I am here is so that others around me can see certain things or maybe learn to see life in a different way.
There is no cure for ALS. And patients often find themselves without the means to fight the disease as they need 24-hour at-home care, especially in the most advanced stage. The average monthly cost is over $6,000.
If patients are unable to pay for care, their relatives often take care of them—something that only a small percentage of them are able to do.
JORGE MURILLO
ALS patient
Often times, those closest to us dedicate their body and soul to our complete care. They sacrifice professional growth and even their own health to dedicate themselves to us for 24 hours. And the salary they receive as the caretaker doesn't always come. So, a lot depends on the pension of the person with ALS.
In many cases, ALS destroys families.
While patients still need good living conditions, they often find comfort and strength in their loved ones.
OLGA ALLENDE
ALS patient
For me, just a smile from my husband, or an “I love you” from my mother or any word or gesture from anyone— from my goddaughter, from my brother, from my family—makes up for everything.
According to the ALS Association, there are about 15 new cases diagnosed each day in the Untied States. Though it is a rare disease, it affects about 20,000 Americans. And the average life expectancy is 2 to 5 years after the diagnosis.
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TR: MG
