Friedreich’s Ataxia leads to changes in strength, balance and energy levels. Things that once felt routine or automatic for mealtimes, like standing at the stove watching something simmer or chopping vegetables, can become difficult! Eating well with FA does not take perfection. There are things that you can do to cook smarter and build out… Continue reading Low-effort Meals, Adaptive Cooking, and Eating Well with Limited Energy
Category: Rare Diseases
Small Adjustments That Make Daily Life Easier with FA
From the very start, a Friedreich’s Ataxia diagnosis means making changes. As a condition it will affect how you move, talk, your ability to work and go to school. What our members have found is that there are a number of small adjustments you can make that go a long way in helping save energy… Continue reading Small Adjustments That Make Daily Life Easier with FA
Getting Pregnant With Friedreich’s Ataxia: What Research Suggests
Family planning while living with Friedreich’s ataxia (FA) stirs up a mix of hope, excitement, fear, and a thousand practical questions. While there are many questions around symptom severity and genetics of your children, the first pressing question is .. is getting pregnancy (realistically) possible? The research is limited but meaningful and points to something… Continue reading Getting Pregnant With Friedreich’s Ataxia: What Research Suggests
Multiple Sclerosis vs Friedreich’s Ataxia
Balance feels off. Walking starts to take more attention than it used to. Fatigue shows up like a weighted blanket without the calming effects. When these symptoms show up in your day to day, it can be hard to tell what is going on because more than one neurological condition can look similar on the… Continue reading Multiple Sclerosis vs Friedreich’s Ataxia
Friedreich’s Ataxia vs. Charcot-Marie-Tooth Disease
Friedreich’s Ataxia (FA) and Charcot-Marie-Tooth Disease (CMT) are conditions that can affect walking, balance and the nerves in your arms and legs. They are both genetic and can present in childhood, teen years, or adulthood. So how do healthcare professionals tell the difference? Well, the difference depends where the problem is in the nervous system.… Continue reading Friedreich’s Ataxia vs. Charcot-Marie-Tooth Disease
Symptoms of Friedreich’s Ataxia
Friedreich’s ataxia rarely announces itself all at once. It begins with small changes that are easy to dismiss like stumbling, fatigue that doesn’t match activity level, or speaking slower than normal. Over time these signs can pile up without a clear explanation as to what is causing them even as they progress. This is why… Continue reading Symptoms of Friedreich’s Ataxia
Friedreich’s Ataxia Resources and Support Groups
It’s been 28 years since the frataxin (FXN) gene, which is linked to Friedreich’s Ataxia, was discovered and still Friedreich’s Ataxia often comes with more questions than answers. Parents, patients, and caregivers can feel isolated while learning about a condition in real time when many clinicians rarely see it. Beyond chasing a diagnosis, daily life… Continue reading Friedreich’s Ataxia Resources and Support Groups
What is Friedreich’s Ataxia
Friedreich’s ataxia (FA or FRDA) is a rare genetic disorder that affects the body’s nerves and muscles. It is an inherited recessive mutation in the gene called FXN (frataxin) which leads to a deficiency of a protein that cells need for energy production. Without enough frataxin certain cells within the nervous system, heart, and muscles… Continue reading What is Friedreich’s Ataxia
Primary Glomerular Rare Kidney Disease (RKD) vs Chronic Kidney Disease (CKD), Differences, Symptoms and Treatment
When we talk about kidney disease, chronic kidney disease (CKD) often dominates the conversation. However, there’s another category of kidney conditions that affects thousands of people worldwide yet receives far less attention: primary glomerular rare kidney diseases (RKD). These conditions present unique challenges for patients and healthcare providers alike, requiring specialized approaches to diagnosis and… Continue reading Primary Glomerular Rare Kidney Disease (RKD) vs Chronic Kidney Disease (CKD), Differences, Symptoms and Treatment
What’s Positive About Disease?
It may seem counterintuitive, but according to some of our members, there are actually some good things that can come out of being diagnosed with a serious illness. In the spirit of Thanksgiving – a time when many people are reminded of all the things they have to be grateful for – we thought we… Continue reading What’s Positive About Disease?