Name:Withheld
Date: Sept 15, 2011
I am 17 years old and I suffer from Fredereich's ataxia. My balance has been getting progressively worse since I was 11 years old. I have not been to a neurologist to get a diagnosis, but after researching FA on the Internet I am quite sure that I have FA. Nothing else fits what I have. My parents are still in denial; they always tell me that I don't have FA, even though they can't tell me what THEY think I have. When I want to talk about it, they tell me, "Not now" or "I don't want to talk about it." I know that they want to pretend that I'm okay and that it's not happening to me, but it IS,and ignoring it is not helping at all. It's so difficult to go to school when everyone around you is normal,& can do all the things that you can't. My school has so many staircases. I can't walk up the stairs without holding onto the rails, and even then it's difficult. With so many people in the passages, it's really difficult to keep my fragile balance because everybody pushes and shoves you from every angle. The kids just don't care. What doesn't affect them isn't their problem, so why would they, right? I have a few close friends who know about my problem and who help me to get to classes and to go up and down hills and things like that. They have made it a lot easier to cope with. I don't know what I would've done without them. I'm really scared about what is going to happen in the future.If my balance wasn't going to get worse then I would learn to live with it. I already am. I just really wish that it wasn't going to get worse, but it is, and I'm really scared. My speech is starting to slur,my far sight is getting worse, as well as my hearing, and my scoliosis is getting worse as well. I don't see the point of life. I don't want to live like this anymore.
Name: Darryn
Date: Feb. 13, 2011
Dear Oprah, I’m absolutely inspired by many of your stories featured on your show and would like to share mine with you. I’m 37 years old and live in the United Kingdom and have a rare disorder called Friedreich’s Ataxia (FA). It’s a genetic, neurological, slow progressive disorder which affects the cerebellum of the brain that affects motor actions i.e. the ability to walk and sadly also my speech and many other actions that involve co-ordination however, it has, thankfully, no affect on my intellect. It is estimated that 2000 people have FA in the United Kingdom (http://www.ataxia.org.uk/). I’m not certain as to how many people in the US have it but I do know that 150 000 people are affected with various types of Ataxia in the US. (http://www.ataxia.org) At the age of four we immigrated to Bulawayo, Zimbabwe, and at the age of seven my parents noted that I was a little clumsy and was checked out by a paediatrician. He did not have the facilities at the time to give me a thorough investigation and referred me to a hospital in Johannesburg where they were better equipped. My condition at that time wasn’t very noticeable and my parents thought I might grow out of it. When I was 8 my step mom had her first born, a baby girl named Simone. I have a three-year-older brother and a three-year younger sister and then came my stepsister. At the tender age of three Simone was sadly diagnosed with Leukemia (cancer of the blood). Because of the lack of medical resources she was also referred to Johannesburg. Now at age 11 my problem became more noticeable and so it was decided that I would go with Simone to Johannesburg. My three-year-old younger sister, Michelle, was cleaning her room and spilt some household detergent on the globe in her bedside lamp. As she looked in her lamp, the globe burst and perforated the cornea of her eye. At the time she was fine but the very next day she was blind in her eye. She was rushed to an eye specialist who referred us urgently to an eye specialist in Johannesburg. My dad drove all three of us, including my mom, in record time to Johannesburg. Michelle saw the eye specialist the same day that successfully performed laser treatment on her eye the very next day. She regained 60% of her vision in her eye. Simone was placed under a group of specialists and they decided that she needed chemo therapy to hopefully put her back in remission and was admitted to the Johannesburg General Hospital. There were a group of neurologists who gave me a number of tests to evaluate my condition and the final diagnosis was Friedreich’s Ataxia. I knew after reading relevant literature that one day I would be confined to a wheelchair but being as young as I was and still doing what any ordinary kid did made it hard for me to believe. To read my full story please visit http://www.mydream2walk.webspace.virginmedia.com
Name: Lolita
Date: June 22, 2009
Name: Caroline
Date: June 1, 2009
Hello, this is a great idea. FA is not a disease that most people are aware of and hopefully this will bring more awareness and knowledge for those that are unaware of this disease. Also, it is a great place to post links pertaining to this disease that may be able to assist those afflicted with resources. My son Michael was diagnosed when he was 15 and yesterday was his 27th Birthday. Everyday is a gift and so precious, so everyday in my heart is his birthday celebration. Thank you for this web site. Caroline
Name: Bridgett Ross
Date: April 4, 2009
It was wonderful finding your site informing people about FA. My experience with FA started as a child watching my precious mother go through the symptoms of FA. My mother was born in 1930 and developed symptoms quite early. By the time I was born in 1953 her symptoms were quite obvious but FA was never mentioned or thought of by the doctors-it was that rare. As a child I did not know that my mother had an illness, just that she was different from other mothers. I was told by family that having three children was a big cause for her 'illness'. Try carrying that guilt around for most of your childhood. Coming from a dysfunctional family my mother had many strikes against her that were only multiplied ten-fold by her illness. I grew up hearing people make fun of my mother, call her crazy and had to go through seeing her committed to the State Mental Hospital by her doctor where she remained for several years. This disease is real and it affects people's lives in ways others did not understand when my mother was suffering with it. In 1974 mother was 44 and still in the State Hospital. I was married by then, 21 yrs old and determined to get my mother out of the horrid conditions she had been forced to live in and find out, once and for all, what was wrong with my mother. I walked into the State Hospital and demanded that they release my mother to my care and several hours later was on my way home with her and had a room waiting for her at a nursing home close to my home-by this time she was in a wheelchair. The next day I phoned my doctor and told him I wanted to know what was wrong with my mother and told him to do whatever it took to get a diagnosis. Fortunately he realized she was obviously suffering from some type of ataxia and immediately sent her by ambulance to MD Anderson Hospital in Houston, TX where they had the proper equipment needed to run test she needed. Finally I had an answer, FA. I wanted to scream and shout at all the people in her life that had laughed at her when she fell; or made fun of her when her words didn't come out the way she intended to say them; and those that acted embarrassed when she choked trying to eat. I was finally able to be with her, visit her, do her hair for her and let her know she was loved and I was proud of her, not ashamed or embarrassed. Mother died at the age of 53. I am 56 as I write this and not a day goes by that I don't remember what she endured and miss her with all my heart. I thank God that FA is finally getting the public exposure it deserves. Now that more is known about FA we should see more research being done with a possible cure someday. I will keep you in my prayers and hope that you are able to control your symptoms and live a long and happy life. I write this in memory of my mother, Betty Joyce, who rests with God.
Name: Lynne Marie
Date: Feb. 1, 2009
My name is LynneMarie. I have twin sons who both have Friedreich's Ataxia. They were diagnosed in their teens, and are now 40. I knew something was wrong when they started to seem unbalanced physically. First it was their writing, being in their teens, I made the mistake of thinking that they were becoming sloppy and careless about their habits and school work. I could not have been more wrong. I was hard on them wanting them to do their best, I had no idea. After that their balance seemed off. Our doctor set us up for tests for them. The specialist said the life expectancy was about 29, but there is a God bigger than any doctor. It has been very hard for them going from running to canes to walkers to wheelchairs. They both try to hide their pain and information about their conditions, particularly falls etc. I think it is because they want to be loved not pitied, and I think it might be because they take it on as their battle to be fought alone .I hope I have not given the message I don't want to hear. I spent a lot of years blaming myself, and wondering what I did wrong to harm them. I also wonder if Ritalin did this, or the meningitis. Sometimes it was hard to face them, out of feeling guilty. I know I answered questions in the wrong way sometimes, in particular in regards to why they have it. As a mom, there have been times I cried and cried for God to take it off of them and even put it on me. I also know I come across as over protective at times and don't mean to, I just love them so much. Disease of any kind can be lonely and debilitating, but I think our pride can make it lonelier. I know I wanted to deny its existence when we heard about it as much as anyone else, then there is anger, sometimes depression and finally a reality to enjoy each other while we have each other and look for the best. Reality says I could die before them by any means so just treasure every moment. I do have to say they both have the most amazing wives, and both twins are also amazing on their own accord. The disease does not impair intellectual ability in anyway; my sons are smart, studious, humorous, and very loving family people. Their younger brother and other family members and I enjoy every minute with them. I had a grandmother who was given 6 months to live and lasted enjoying her life for many years beyond what anyone could imagine. I have the same hope and faith for my wonderful sons...that they will enjoy life to the fullest and continue to be great men as they are known to be. I am still learning from them. I hope many will get on board to help draw attention to the reality of this disease and help others to. To other moms, keep praying. To my sons, keep believing, love you all. Friedreich's Ataxia has introduced me to a real face of courage.