Cerebellar Ataxia The post Cerebellar Ataxia appeared first on ..read more

This is the song that doesn’t end, yes it goes on and on my friends. This is the song that doesn’t end, yes it goes on and on my friends. This is the song that doesn’t end, yes it goes on and on my friends. This is the song that doesn’t end, yes it goes on and on my friends. This is the song that doesn’t end, yes it goes on and on my friends. This is the song that doesn’t end, yes it goes on and on my friends. This is the song that doesn’t end, yes it goes on and on my friends.    Image Description goes here Replace this image This is the song that doesn’t end, yes it goes on and ..read more

Ataxia Only Joking! The post Ataxia Only Joking! appeared first on ..read more

Refsum Disease - One in a Million. Kristie DeMarco's Journey As part of the Ataxia Aware project we are sharing personal accounts of those suffering with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them. Journey to a Diagnosis At the end of 2016, I was probably in the best physical condition I had ever been in. I felt AWESOME. I had just completed a full Ironman triathlon in LouisVille in October 2016. I had done this after my 6 year mission of getting healthy. In 2 ..read more

As part of the Ataxia Aware project we are sharing personal accounts of those suffering with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them. It is only on reflection that I can acknowledge my problems with balance in childhood. In adulthood I attributed it to my inturned right foot. However it was only after surgery in 2002, to straighten my foot that I was referred to neurology and diagnosed with idiopathic cerebellar ataxia. My parents had my shoes wedged at about 5 years ..read more

Add heading here Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. The post This is a test appeared first on ..read more

Patient Power and Participation Study Aims The aim of this PhD study is to explore the relationship between quality of life and social support for adults living with rare genetic skin conditions. Ultimately the hope is that this research study, will contribute to a better understanding of the psycho-social needs of the rare disease community, leading to an improvement of care and support which is both person-centred and empowering. This study included an on-line survey and semi-structured interviews of adults living with rar ..read more

International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and Ataxia organisations around the world to help shed light on this rare disease. Ataxia could be the most serious condition you have never heard of. So, what is Ataxia ? Ataxia is a rare disease or condition of the cerebellum, the part of the brain that controls planning, and executing movements of your body. Problems with the cerebellum causes lack of coordination, lack of balance, and difficulties with speech. Ataxia is a Greek word meaning “Lack of Order.” Our missio ..read more

Hi, I’m Meg, a 31 year old with a rare disease called Spinocerebellar Ataxia – Type 1. I used to be a high school English teacher, but now I’m a stay-at-home mom who’s sharing this next chapter of my life to promote SCA awareness through several different outlets! Since Ataxia affects each person differently – depending not just on the type, but the age of onset, progression rate, family history, other medical issues, current lifestyle, etc. – I’d like to share my story with you. Megan McNally in front of a fountain sitting in a wheel chair. She is wearing a blue shirt, black leggings, and b ..read more

Living with Lipodystrophy by Becky Smith A typical day for me starts bright and early at the sound of my alarm. I have to get up to this immediately, otherwise I will never get up. It is normal for individuals without Lipodystrophy to still feel tired when waking up, however, when I wake up the fatigue is intense. This is one of my biggest struggles which lasts throughout the day. It can often feel as if I have barely slept and I can only describe it as a feeling of desperation for sleep. I also often wake up with sore muscles, similar to the pain you’d get after weight lifting, without hav ..read more