Category: Rare Diseases

Looking Back on How One Bride Adapted Her Wedding for Friedreich’s Ataxia

Earlier we talked about what helps when planning a wedding as a disabled bride from the lens of Libby, a PatientsLikeMe member living with Friedreich’s ataxia. Living with a progressive disease, like Friedreich’s ataxia, that affects mobility and energy means considering details that many couples never have to consider. Accessibility, energy conservation,mobility, and asking for… Continue reading Looking Back on How One Bride Adapted Her Wedding for Friedreich’s Ataxia

Wedding Planning with a Disability: 5 Lessons from a Bride Living with Friedreich’s Ataxia

Wedding planning comes with plenty of decisions. Choosing a venue, finding the right dress, managing timelines, and trying to enjoy the experience can feel overwhelming for any couple. For people living with a disability, there can be another layer of planning. Accessibility, energy levels, mobility, and adapting expectations become part of the process. For Libby,… Continue reading Wedding Planning with a Disability: 5 Lessons from a Bride Living with Friedreich’s Ataxia

How to Fit Mobility Stretches Into Your Day with Friedreich’s Ataxia

When you’re living with Friedreich’s ataxia (FA), staying active isn’t always about finding time for a long workout. Sometimes we are sick or very busy and it’s just about finding small moments throughout the day to keep your body moving. One PatientsLikeMe member, Kelly, shares how she combines cooking dinner with her mobility exercises. It’s… Continue reading How to Fit Mobility Stretches Into Your Day with Friedreich’s Ataxia

Staying Active While Traveling with Friedreich’s Ataxia: Simple Hotel Room Exercise Tips

Travel can throw off anyone’s routine. When you are living with Friedreich’s Ataxia (FA), staying active while traveling can be hard especially when it means leaving behind a familiar set up that helps support daily movement. Hotel gyms may not always feel accessible or comfortable. The equipment may not fit your needs or the environment… Continue reading Staying Active While Traveling with Friedreich’s Ataxia: Simple Hotel Room Exercise Tips

Managing the Mental Exhaustion of Constantly Adapting to Life With FA

Have you felt the constant wear of having to change parts of your life to fit with your new normal? Friedreich’s Ataxia can do that. Over time, the mental and physical exhaustion that comes with adapting to a chronic health condition can get to anyone! There is no shame in it, and for better or… Continue reading Managing the Mental Exhaustion of Constantly Adapting to Life With FA

How to Stay Social and Keep Doing What You Love With FA

How do you stay connected to the people and things you love as you navigate the changes that come with Friedreich’s Ataxia? FA changes how your body moves, how quickly you fatigue, how you navigate public spaces, and sometimes even how you see yourself. Things that once were effortless can get harder, more exhausting, or… Continue reading How to Stay Social and Keep Doing What You Love With FA

Low-effort Meals, Adaptive Cooking, and Eating Well with Limited Energy

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

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