Erin Kiernan, a teenager with Friedreich's Ataxia, monitors her cardiac function closely and gets help from several specialists. Introduction Questions and Answers Does It Run in the Family? MDA's Search for Treatments and Cures MDA Is Here to Help You

INTRODUCTION Dear Friends: When I was about 14, I started having problems keeping my balance when standing or walking. After doctors did some tests, I found out I had Friedreich’s ataxia. My parents and I immediately learned all we could about FA, with MDA’s help. There was no history of the disease in our family so it was a whole new world to us.   Michelle Moffitt Smith This pamphlet has been prepared to help you deal with just that situation, by giving you much of the basic knowledge about FA that you’ll need as you or your child learns to live with this disease. You’ll find out that FA affects each person differently, and that, while it presents challenges in daily life, there are many techniques, technological devices and medical treatments to help you meet those challenges. You’ll read here that FA doesn’t affect the intellect and doesn’t always take away the ability to walk. You’ll also read that some exciting new research in FA may lead to the development of drugs to alleviate symptoms. As I adjusted to being a teen-ager and a young woman with a disability, I learned a lot — not only about FA but about myself. I became more independent and learned to take charge of my education, my medical care and my other life experiences. Early in my years with FA, a doctor told me something that’s guided me ever since: He said you can’t use having a disability as an excuse for letting others make your decisions or for not pursuing your dreams.   Michelle and James Smith at their wedding Now, at 25, I’m studying for a master’s degree in psychology and working as an assistant to two professors. When I finish my degree, I’ll either get a teaching job or go on for a doctorate. I met my husband, James Smith, through MDA’s magazine, Quest. He also has a neuromuscular disease, and together we deal with our challenges and plan our future, just as any other couple does. I know of many productive, successful people with FA — business leaders, outstanding students, engineers, active teens and bright kids, parents, even athletes. We’ve all learned to strike a balance between adapting to our limitations and surroundings, and living a fulfilling life despite them. Besides my wonderfully supportive family and friends, I get tremendous help from the Muscular Dystrophy Association. MDA offers a great program of services, leads the world in Friedreich’s ataxia research and keeps us well informed about the disease. See "MDA Is Here to Help You" for details of the Association’s program. While MDA’s research program continues making strides toward better treatments and a cure, it’s good to know that people with disabilities have more opportunities than ever before to develop and use their abilities, and that the laws entitle us to equal employment opportunities and access to public places. Whatever challenges FA presents in your life, you can be sure that MDA and all its resources are there to help you and your family. You’re not alone. Michelle Moffitt Smith Dayton, Ohio Back to Disease Booklets My Life with Friedreich's Ataxia. I was diagnosed with Friedreich's Ataxia in January 1993 after 7 years of believing I had a totally different condition called Charcot Marie-tooth disease. Friedreich's Ataxia is a rare and progressively deteriorating disease of the central nervous system (that's what is says in all the medical books!) It usually begins to appear in otherwise healthy children between the ages of 5 & 17. I first began to notice having problems with my balance when I was about 14. From then up to the age of 22 I chose to use no walking aid, preferring instead to stumble about on my feet. At 22 I decided to begin using crutches to help me walk and by the time I was 25 I was using a wheelchair full time.  For more information about Friedreich's Ataxia visit the Official Ataxia UK Website by CLICKING HERE. Ataxia UK is always looking for ways to raise money to support people like me and to fund research into the disease. You can donate online using this Ataxia UK site or alternatively pay me online by clicking the FastPay logo at the bottom of my homepage and I will forward your donation on to them. I live independently in my own bungalow that has been adapted for a wheelchair user: It has lowered work surfaces in the kitchen with a shallow sink. It has a shower with a stool so I can transfer to it from my chair and a lowered sink in the bathroom too. I also now have 4 floor to ceiling poles , one to help me transfer safely to the toilet, one to the sofa, one to my bed and the other to my powerchair in my bedroom. In October 1998 one of my best friends Melanie Preston died. Please read my tribute to her. I drive my own car, a Ford Fusion 2. This has had hand controls added to it (I began using hand controls in 1995 when it became dangerous for me to continue driving using my legs). My car also has a wheelchair hoist attached to the roof so I can drive around and take my chair with me. Pressing a button inside the car brings out a motorised arm which reaches to the floor. I can then attach the chair to it (having transferred myself to the car seat and folded the chair) and the motor then lifts the chair onto the roof. This makes me totally independent but since needing to use my powerchair (above) more and more [if not all the time] outside it is limiting my mobility somewhat only being able to use my manual chair with the hoist. The answer to this problem is the Renault Kangoo Assist This is available on the motability scheme but unfortunately I only learnt about it after just having aquired my Ford Fusion. I have however contacted motability and asked if I can end the contract on the Fusion and get the Kangoo. If successfull the picture of the Kangoo will be posted here. So watch this space!   There is no direct treatment for Friedreich's Ataxia and no cure. Research is always ongoing though and more and more drugs are becoming available that can help sufferers deal with some of the symptoms caused by the disease. However, I am no doctor and my medical knowledge is extremely limited. So all I can do is raise money to enable the professionals to do their job. On many occasions I have sat outside Sainsbury's with a collecting tin and I have raised money in other ways too.... In August 1995 I raised £1,000 by doing a tandem parachute jump. I jumped from a plane at 11,000 feet above an airfield at a place called Windrush. It seemed like a good idea at the time but as you can see from looking at the picture below (left) as the time before leaping out the plane drew towards the last couple of seconds - I wondered whether it was all worth it. After a few more seconds  I felt even worse but when the parachute eventually opened (see sequence above) it was a wonderful feeling looking down at the fields and seeing the river Avon winding its way into the distance.   Is this a face of worry? ..... yes it is!! For my 25th birthday (20th September 1993) I raised £1,500 by having this tattoo engraved on my left arm. In June 2002 I bought an Auriga 4 Scooter that I can store in the shed in the back garden of my bungalow. In the 2 pictures below you can see me using it. The picture on the left was taken by my friend Simon at Lightwater Country Park in February 2003 and the one on the right was taken by my sister up at the Park by the swings in Bagshot in August 2002. It has given me much freedom and independence and means I am not so dependent on my car to get around. I think I made a good choice of scooter. It has lights so that I can use it after dark, adjustable arm rests, seat and steering column and so far has been very reliable. It wasn't the cheapest model but has already proved worth every penny.