Tuesday, January 27, 2009

SMA Information

While I'm sure most of you have already done your homework on the disease, I feel the point of this blog, at least for right now, is to raise awareness. I want to share some facts about it so that you are more informed and can talk to others about it. For anyone in our family, you too could possibly be a carrier! We do not know what side of our family this gene is being inherited from, so please think about getting tested.

Spinal muscular atrophy (SMA), the number one genetic killer of children under the age of two, is an often fatal disease that destroys the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control, and even swallowing.

SMA is one of the most prevalent genetic disorders.
One in every 6,000 babies is born with SMA.
SMA can strike anyone of any age, race or gender.
One in every 40 people carries the gene that causes SMA. The child of two carriers has a one in four chance of developing SMA.
7.5 million Americans are carriers.

SMA Patients are classified into four types based on milestones achieved at onset of SMA. Type I and II are the most prevalent.

Type I, or Werdnig-Hoffmann Disease, is the most severe form of SMA. Type I SMA strikes infants between birth and six months old. Children affected with Type I cannot sit without support.

Type II affects infants between seven and 18 months old. Type II patients may be able to sit unaided or even stand with support. They are at increased risk for complications from respiratory infections.

Type III, also known as Kugelberg-Welander Disease, is the least deadly form of childhood-onset SMA. It strikes children as early as the age of 18 months, but can surface as late as adolescence. Type III patients are able to walk, but weakness is prevalent. Most patients eventually need to use a wheelchair.

Type IV is the adult form of the disease. Symptoms tend to begin after age 35.

SMA does not affect sensation and intellectual activity in patients. It commonly is observed that patients with SMA are unusually bright and sociable.
**this was taken from the FSMA website**

Be sure you go sign the petition to cure SMA! We need to get our government to help fund research for this horrible disease! The petition was started by Bill and Victoria Strong, who have a daughter with Type I. To learn more about Gwendolyn, you can read her story on a blog they keep for her.

1 comment:

Anonymous said...

I just wanted you to know I signed the petition for sma and sent it to 5 other people. I haven't commented much because I am really not good with words. I also wanted to tell you I watched the video of Jason and Little Eli and I laughed and then I cried. I think you two are two of the most wonderful parents I have ever seen. I love you guys and you have to be strong and it has to get better for you guys. Their are two many people who are praying for you and love you.

With love and many prayers
Shelby Potter