Getting Your Head Around A Genetic Diagnosis: The Steps You Should Take


Written by
Featured Contributor 

Genetic conditions can tear families apart. From cystic fibrosis to muscular dystrophy, these horrendous conditions can do untold damage.

In some cases, a condition such as these will be apparent at birth. From the moment your child comes into this word, you’ll be coping with their altered reality. It’s a devastating way to start parenthood and a challenging time for everyone. Before you’ve had a chance to enjoy parenthood, you’ll be caring for your little one in a way you never imagined.

Sometimes, things play out differently. Often, genetic conditions are not instantly recognizable. As such, you may have had been oblivious to the problem for years. Then, a habit of stumbling, or a recurring cramp, turns out to be any parent’s worst nightmare. Your lives come crashing down as a late diagnosis is reached.

Though both scenarios are equally devastating, the second is, in some ways, harder to deal with. Your child will be old enough to know what’s happening, and so will be right there on the journey with you. They may fall into a depression or turn to you to guide them. Only, you’re feeling your way through the situation, too. And, to help you do that, we’re going to look at a few steps you should always follow.

Always stay positive

You need to remember that you are still the parent. No matter how you feel, you need to stay positive for your child’s sake. A genetic diagnosis can be devastating from the outset. But, over time you may realize that the situation isn’t as bleak as you feared. Approached in the right way, there’s no reason your child can’t live the life you had all imagined. But, that’s not going to happen if you all give up hope. So, stay strong for each other!

Keep in touch with developments

You may have had little to do with the medical world in the past, but you should get on close terms with it now. Science does amazing things, and developments are happening all the time. Ever-developing gene therapies work to target illnesses just like these. While they’re yet to be put into practice, research is forever being done. You can find out more at www.poseida.com, and other sites like them.  There’s every chance that developments like these could change your lives in the future. All it takes is patience and hope.

Reach out to others

The chances are that you’re all feeling a little confused right now. And, though the doctors know the facts, they can’t truly understand how you feel. As such, it’s worth taking the time to reach out to other families experiencing the same thing. No matter what condition you’re dealing with, there are sure to be others. You could head online to forums like the cystic fibrosis forum found at forums.cysticfibrosis.com. Or, you could join support groups, where your child can meet others with the same condition. Here, they can begin to come to terms with what’s happening, and you can too. 

Popular Posts