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Spinal Muscular Atrophy – A Disease in Need of A Cure

August is National Spinal Muscular Atrophy Awareness month.

by Malik Green

In 1984 a group of families, each with children suffering from SMA formed a group called Families of Spinal Muscular Atrophy.  In 1996 they decided to create and coordinate a National Awareness month for SMA.  Families of SMA have grown from a courageous group of families to an international network of fundraising and support including 31 volunteer Chapters throughout the United States.

Since the month of August is used to bring attention to this terrible disease; I am posting this article to do my part in helping to bring  awareness to such a debilitating disease.

Spinal Muscular Atrophy is a rare genetic disease.  Spinal Muscular Atrophy manifest itself in various degrees of severity; however, no matter the degree of severity, SMA basically causes the muscles in the body to deteriorate, which eventually impairs mobility.  It affects the degree of control nerves branching from the spinal cord have over voluntary muscles.  Our voluntary muscles are used for task such as crawling, walking, head and neck control and swallowing.

SMA manifests in many ways, which will vary especially according to type. In all types of SMA, you can expect muscle weakness, wasting and atrophy, as well as muscle coordination problems.

SMA primarily afflicts children; however, it can afflict anyone of any age, and any ethnic group or gender.  The most severe cases however do involve infants and children under the age of six.   Approximately 1 in 6000 babies are born with the disease and about 1 in 40 people are carriers of this genetic disorder. If both parents of a child are carriers of the disease, the child has a 1-in-4 chance of developing SMA.

All of the muscles in the body are affected by SMA; though the muscles closest to the torso; (shoulders, back, hips and neck) are more severely affected.  People afflicted with SMA have mobility issues; but have normal intellectual ability and are bright and sociable individuals.

The following are symptoms of SMA in an infant:

  • Breathing difficulty, leading to a lack of oxygen
  • Feeding difficulty (food may go into the windpipe instead of the stomach)
  • Floppy infant (poor muscle tone)
  • Lack of head control
  • Little movement
  • Weakness that gets worse

The following are symptoms of SMA in a child:

  • Frequent, increasingly severe respiratory infections
  • Nasal speech
  • Posture that gets worse

If you suspect someone of having any of these symptoms have a doctor to review family history and conduct a brain/nervous system examination to find out if there is family history, floppy muscles, lack of deep tendon reflexes and signs of twitching of the tongue muscle.

There currently is no cure for Spinal Muscular Atrophy.  The best hope for managing the disease is early detection; and the use of certain medicinal remedies that can help manage the complication associated with SMA.

These disheartening facts demonstrate the need for more awareness in regards to the SMA disease and the need for more research.  If you would like to support or learn more about Spinal Muscular Atrophy the following websites offer a ton of information.