Fourteenth annual International Ataxia Awareness Day
KIM BROWN | 9/12/2013, 4:35 p.m.
Chances are that you have never heard of ataxia. That is why the National Ataxia Foundation and other organizations around the world have declared Sept. 25 “International Ataxia Awareness Day” to help get the word out about the disorder.
Ataxia is group of rare and often fatal degenerative neurological disorders. An estimated 150,000 Americans are affected with ataxia. Symptoms are progressive and often impact coordination, hearing, vision and speech. Ataxia affects all genders and ages, but too often it affects children and young adults. At this time, there is no effective treatment or cure for ataxia.
“The National Ataxia Foundation was established in 1957 and is dedicated to serving families affected by ataxia through research, education and support services,” said Michael Parent, executive director of the foundation. “Ataxia can affect anyone at anytime and is caused by either a dominant or recessive gene. There are also sporadic forms of ataxia that have no known genetic link or family history.”
In the dominant forms of ataxia, a child has a 50/50 percent chance of developing the disorder. In the case of recessive forms, each child born has a 25 percent chance of being affected or a carrier of the gene, a 50 percent chance of being a carrier and only a 25 percent chance of not being affected or a carrier of the gene. In the recessive forms of ataxia, many times people do not know they carry it until their child begins to display signs of in coordination.
Living with ataxia has had it rewards and challenges, but in everything I have gone through, I give all the praise, thanks and everything I have to God. I was first diagnosed in 2000. My family, without question, has had to go through every stage and step of my ataxia. I noticed various issues with my walking, and many doctors said I had vertigo. It wasn’t until I had an MRI that they noticed I have cerebellar atrophy. My cousin and I have the same disorder.
On an average week, I may have two or three doctor appointments, because with ataxia comes a number of non-working things. I have dysphagia, so swallowing meats, bread and even oranges—which I love—can be quite difficult at times. I’ve had urinary incontinence surgery, which worked for a while but I started to have urgency again to the point where if I didn’t get to the bathroom in time, it would come out, so I would wear Poise pads.
I have to get an Interstim device for the bladder (basically a pacemaker for the bladder) because it was very affected by ataxia. I count my blessings everyday because it truly could be worse. Many others with ataxia can’t even speak without using voice recognition systems or walk at all and have to use a wheelchair. I have a walker and a scooter, but as long as I have the use of my legs, I will use them.
Awareness is not just for me, it’s for all of my family, and I say “family” because we are in this together. Everyone affected with ataxia: We are the strength behind it!
To find out more about ataxia, visit the National Ataxia Foundation online at www.ataxia.org or call 763-553-0020. Some useful books include “Cerebellar Ataxia” by Gerd Numitor , “My 35 Years With Ataxia” by Patricia Birdsong Hamilton , “Scooter Sagas: Coping with Ataxia” and “From Where I Sit” by Cheryl Cusick and Jamie Lynn Cusick.