Since there are 15,000 people who share the same genetic mutation, also known as Friedreich’s Ataxia, it’s important to share each other’s stories and perspectives. The FA community is bigger and closer than most people think — patients are diagnosed at different ages, stages and various locations all over the…
Let’s just put it all out on the table: depression and anxiety come with having Friedreich’s Ataxia. The sadness, frustration and angst that you feel is legitimate and is shared with every other FA patient. The mental health aspect can be just as debilitating as all the other major health complications…
After being diagnosed with a neuromuscular disorder with no set treatment plan and no cure, optimism and proactiveness may seem like a stretch. You may feel like there’s nothing you can do to help your situation or change your fate. However, there are things you can physically do to possibly…
Happy New Year to all of you! I hope 2018 has been treating you well so far and that you’re working toward your new set of goals (or existing ones). One of my goals every year, much like many of my peers, is to raise awareness for…
In today’s world, it’s become a trend to share every detail of your life — people always want to hear your story. No matter who you are, people are more curious than ever and like to engage in more meaningful conversations. Maybe it has to do with the popularity and…
January is the perfect time for new goals, new hobbies and a fresh start. The whole “new year, new me” phenomenon is in full effect with motivation at an all-time high. It always seems like people are more focused than ever at this time of year! But why does that…
It’s that time of year again. It’s time to gather with your friends and family for the holidays and wait for the flow of uncomfortable questions to start. It seems as though nobody listens or pays attention to the seriousness of Friedreich’s ataxia and having to repeat the same thing…
With the year coming to an end and Christmas coming faster than ever, I’ve become more reflective on what memories 2017 holds. Every year, I find myself saying, “Wow, I never thought I’d be here.” And yet, here I am again, repeating that tradition. 2017 was filled with…
Friedreich’s ataxia has numerous levels of frustration that can sometimes be maddening. The fact you have to depend on someone else to live your life definitely causes tension and can be debilitating in itself. You never feel refreshed after a decent night’s sleep, which affects the amount of effort you…
If you are a Friedreich’s ataxia patient, it’s likely that you’ve felt like a burden on your loved ones at one time or another. Sometimes you even feel bad about hanging out with your friends because you know how much work it will be for them or how much help…
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