Marc's story: A brief look at life with ALS in the US
Last updated: 30 June 2021
Our support team speak with many patients every day, but once in a while, we are lucky enough to be able to relay a story written by the patient. Here is one such story from a gentleman in the United States with Lou Gehrig's disease, also known as amyotrophic lateral sclerosis (ALS) or motor neuron disease (MND).
My name is Marc and in the summer of 2018 I was diagnosed with ALS. I started having symptoms in 2016. This disease has totally changed my life. I went from being a socially active individual to being wheelchair-bound and totally dependent on my family for personal care.
There is no known cure for ALS. My health has continued to progressively decline very rapidly. After seeing multiple doctors and health care professionals at various medical institutions to receive what basically amounts to a death sentence, I have decided to try an experimental treatment, ibudilast, recommended by my doctor. This treatment is currently in clinical trials in the United States to study its potential to slow the progression of ALS. This drug, which has been granted orphan drug designation by the FDA, is not available for purchase in America.
Help is available
I was able to obtain my ibudilast through an overseas company called everyone.org. The process was seamless and very easy with the company's dedicated staff there to update you on every step of the ordering process until delivery. Staff even followed up to make sure I was satisfied with the service. I was very pleased with the overall process ordering from everyone.org.
-Marc, May 2019