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After a Rare Disease Diagnosis: How to Find Resources


It’s no secret that life expectancy in humans is way better than a couple of hundred of years ago. Still, there are many incurable conditions out there, even with all the medical progress that has been made. A percentage of them is represented by rare diseases.

Most of these are genetic, which implies that they are embedded in one’s code and that person will have to live their entire life with the condition. For a disorder to be rare, it has to affect a very small percentage of our planet’s human population. In fact, some are so uncommon that there is only one known patient that suffers from them.

How to Handle the Situation


Rare genetic disorders such as Down syndrome, cystic fibrosis, hemophilia, cri du chat or Kallmann syndrome are caused by mutations at the level of the chromosomes and have no known cure. Having your child be born and diagnosed with one feels like the end of the world at first, but it’s important to stay strong and not blame yourself so that you can be there for your him or her.

To achieve, this, you need to ease yourself and your family into it. Here are three crucial steps in finding the resources for dealing with a rare disease diagnosis.

1. Stay Correctly Informed

The first step in handling your child’s affliction is to always rely on medically accurate information. Avoid searching for it on the Internet and accessing a string of random pages because you will scare yourself. There is a lot of false or inaccurate information out there, so be careful.

A reliable source of information on this topic available online is the Genetic and Rare Disease Information Center, a project funded by the National Institutes of Health and the National Human Genome Research Institute. There you can browse any disorder alphabetically and even find related advocacy organizations which you can contact for further help.

Still, medical professionals know best. If you are looking for the opinion of an expert, the aforementioned advocacy groups are the best place to find someone who can provide you with some clarity regarding your child’s disorder.

2. Reach Out to Other Parents

Even if your child has an incredibly uncommon disease, there is at least one other family out there in the world dealing with the very same issue. Don’t be afraid to reach out to the parents of other affected children. You can provide valuable moral and emotional support for each other during these trying times.

Furthermore, plenty of people in the same situation have shared their stories online. If you don’t feel comfortable with reaching out in person, reading them is also a worthwhile option.

One such fearless parent is the amazing Karen Aiach, a woman who founded a medical research company in order to study her daughter’s disorder. Stories such as hers can provide you with a different perspective and helpful advice on how to cope with having a child that suffers from an unusual affliction.

3. Manage Your Finances

According to The Guardian, the government can recognize your family as having a disabled child if your little one suffers from a rare condition. While you might feel like you don’t want to draw that kind of attention on your situation, this can offer you benefits such as a money grant to help you adapt your home to the needs of your child.

Furthermore, some conditions are eligible for tax and utility deductions for your household. To kickstart the process, you will need to contact your local authority, which will then schedule a visit from an occupational therapist who will assess your situation.

Conclusion

Having a little one that has been diagnosed with a rare disease is never easy, but there are things you can do to improve the quality of their life. Furthermore, by reaching out and managing to stay in control, you will also be stronger and more able to help them. It’s a difficult process, but you owe it to your child to give it your best shot.

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