Parenting a Child with Friedrich’s Ataxia? Here’s a Resource for You

Having a difficult time finding resources on Friedreich’s ataxia (FRDA)? Even for the generation that grew up with Google, keeping up with the news online can be tricky.

You’ve got pop-up ads disguised as news articles, hyperpartisan political blogs spouting campaign rhetoric, and more coverage of more kinds of news than ever before. Even if you’re savvy enough to steer clear of red herrings and spam, the sheer volume of information available on any given subject is bound to make your head spin.

So how do you stay informed about the issues without getting sucked down the proverbial rabbit hole?

Onset of Friedreich’s ataxia is typically between 10 and 15 years of age, but FRDA has been diagnosed in people from ages two to 50. FRDA progresses slowly, and the sequence and severity of its progression is highly variable.

Although there’s no cure for FRDA as yet, treatments exist for cardiac symptoms, and there are ways to manage ataxia and muscle weakness. Many people with FRDA lead active lives—going to college, holding careers, getting married, and starting families.

Did you catch that last part? Many people with FRDA lead active lives…

That’s hope wrapped up in seven words.

That’s encouragement for a parent or guardian caring for a child living with Friedreich’s ataxia—a morale boost to take control of the situation, be empowered to create a plan, and find the resources to do so.

The Internet is the biggest bank of unfiltered knowledge. It is extremely difficult to find the stuff you need in exactly the form you want.

Let me help you out. You need a parenting resource to help you with caring for your child living with Friedreich’s ataxia? Click here.


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