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Helping Patients with Rare Diseases Voice Their Opinions

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Helping Patients and Caregivers Voice Their Opinions

Get to Know: ALS

July 13, 2019 Wes Michael

Amyotrophic Lateral Sclerosis, or ALS, has been gaining a lot of recognition over the past few years. It used to be known as Lou Gehrig’s Disease. But now most people have heard of its real name. Remember the ice bucket challenge from a few years ago? That was to raise money for ALS research, and it was very successful.

ALS is a neurogenerative disease, meaning it affects the brain and spinal cord. It starts with muscle weakness or stiffness. Over time, ALS patients lose the ability to initiate and control muscle movements. They can lose the ability to speak, eat, move and breathe. Once it starts, it progresses. Unfortunately, average survival time is only 3 years, though some have survived for 10 and even 20 years.  

Most cases of ALS are sporadic, which could strike anyone. About 5-10% of ALS cases are familial, meaning they are inherited. In families with familial ALS, each child has a 50% chance of developing the disease.

Most people who develop ALS are between the ages of 40 and 70, but it can also occur with those in their 20s or 30s.  Military veterans are twice as likely to come down with ALS as the general population. No one knows why. Whether they were in combat or not, and regardless of branch of service.

We have been involved with the ALS Association, attending their various walks and symposia, meeting patients and families. We thank the ALS for the information in this summary. ALS is a heart-breaking disease. However, the good news is that there are treatments available and more in the works. When we get a study request for ALS patients and caregivers, it means companies and researchers are working on new treatments.

Filed Under: Business, Get To Know, Patient

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