How do researchers and scientists make progress on treatments and cures for rare diseases? The human body is incredibly complex, and understanding how certain conditions affect it takes time. For a condition like Friedreich’s Ataxia, that means years of careful research, data collection, comparison, and slow progress. One of the leaders in this charge is… Continue reading How FARA Is Helping Move FA Research Forward and Why Collaboration Matters More Than Ever
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
Tracking Your FA Progression Without Letting It Take Over Your Life
You do not want to have a condition like Friedreich’s Ataxia take over every part of your life. However, tracking your progression, and understanding how your physical capabilities alongside your mental health change over time, is important! So how can you track your progress while still preserving time throughout your day to do things you… Continue reading Tracking Your FA Progression Without Letting It Take Over Your Life
The Walking Routine People Actually Stick With After a Heart Health Scare
A heart scare is a frightening event to go through. The concern about your health and your future is often too much for people to process all at once. While working with your doctor, you will likely need to address the healthy lifestyle changes you should make to reduce your chances of a future event.… Continue reading The Walking Routine People Actually Stick With After a Heart Health Scare
Managing Fatigue with Friedreich’s Ataxia: Tips For Daily Life
For normies, a full night of sleep means waking up refreshed, ready for the day, and as if your energy battery is at 100%. For people living with Friedreich’s ataxia (FA), it can feel different. PatientsLikeMe member, Tiffany, shares how the chronic fatigue she feels from her FA experience feels as if every morning after… Continue reading Managing Fatigue with Friedreich’s Ataxia: Tips For Daily Life
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
Why Cruising Can Be One of the Best Ways to Travel When You’re Living With FA
Taking a vacation when you have a degenerative condition like Friedreich’s Ataxia takes a huge amount of preparation. You cannot expect to just hop on a plane, get to your destination, and be able to enjoy everything there is to offer! New locations mean new accessibility challenges. Will the restaurants have ramps? Does the hotel… Continue reading Why Cruising Can Be One of the Best Ways to Travel When You’re Living With FA
Planning Ahead with FA: How to Navigate Financial, Insurance, and Future Care Decisions Before They Feel Urgent
Getting a Friedreich’s Ataxia diagnosis means dealing with change. It means accepting and preparing for your life to be different. For many people with the condition, it means being thrown into a world of medical jargon and complicated insurance questions that most people never consider having to get their heads around! But being prepared, and… Continue reading Planning Ahead with FA: How to Navigate Financial, Insurance, and Future Care Decisions Before They Feel Urgent
What Should I Actually Be Asking My Doctor? FA Appointments, PT, and Planning Ahead
Interview with PatientsLikeMe Patient Advocate, Kelly Gregory Doctor’s appointments can feel overwhelming, especially when you’re not sure what questions to ask. In this Q&A, I’m sharing what I’ve learned about preparing for appointments, getting the most out of physical therapy, and planning ahead while living with FA. Q: How do you prepare before an appointment… Continue reading What Should I Actually Be Asking My Doctor? FA Appointments, PT, and Planning Ahead
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