Some of you already know that my sister was diagnosed with ALS about a year ago. When this happens, the doctors are quick to tell you that the prognosis is three to five years and then death. They also tell you that some people live for decades. So, at the time, you look at you family member, who still seems quite normal, and think that she will be the one that beats the average. She will be the one who is still going in twenty years. You think that there will be time to find a cure. You imagine that someone is really looking.
A year has gone by, and all of the hopes are out the window. The progress has been alarmingly quick. In the meantime, you scour everywhere, looking for at least some understanding of the disease, some starting point from which to search for miracles. But you find nothing.
For one thing, doctors are even really sure what ALS is. It’s the disease that is not something else. If you have all the tests and they cannot discover something else to match your symptoms, then it must be ALS.
Behind cancer, there is no more scary disease than ALS. Actually it should be number one, because no one has survived it yet. No one ever talks about it, and yet it turns out to be the most common neurological disorder. So, why is so much money going to cancer research and nothing about ALS? Maybe I’m wrong, but my take is that they haven’t got a clue what they are doing and don’t want to let anyone know.
A lot of non-clinicians know a lot about cancer and how to fight it because it has been openly discussed in millions of places. But ALS seems to be the clinicians’ best-kept secret. I want to help my sister, and I know that it’s a long shot that I will find anything that could save her. But, what is really frustrating is not even having a clue as to what I am seeking.
I hereby make my appeal for any information that anyone has from anywhere about this subject. As I have told my sister, we should try anything. After all, the prognosis can’t get worse. Like I said, I’m not the world’s greatest genius. But, it seems that we have to have everyone working on this together. Who knows what I could discover. But I have to have a place to start. I can’t wait any longer. Help me if you can.
- Western University researchers discover genetic mutation linked to Lou Gehrig’s disease (lfpress.com)
- One gene predicts rapid ALS progression 80 percent of the time (sciencedaily.com)
- Researchers uncover toxic interaction in neurons that leads to dementia and ALS (medicalxpress.com)
- ALS patient is living his second miracle (pattidudek.typepad.com)
- Lou Gehrig Disease Symptoms (mademan.com)
- Identification of Epigenetically Altered Genes in Sporadic Amyotrophic Lateral Sclerosis (plosone.org)
- One gene predicts rapid ALS progression 80 percent of the time (medicalxpress.com)