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  • Writer's pictureAreeg Sweis

Four Tips for Parents with Children Suffering from a Rare Disease

Being a parent means that you're taking on the life-long responsibility of ensuring your child lives a long, healthy life. When your child is diagnosed with a rare disease, your duties as a parent increase if there's not a definitive cure or treatment. There will be times when your child becomes exceptionally frustrated or experiences discomfort due to their condition, and you must know how to care for them and yourself.

Here are some parenting tips on dealing with a rare disease patient:

1) Find a specialist

Many rare diseases have specialists that the patient can seek for medical advice and treatment if possible. Tertiary or quaternary care may be the best option for rare disease patients and their families, as these are high-level specialized forms of care intended for individualized healthcare needs. A quick online search can assist you in finding a specialized doctor or care center for your child.

2) Be patient

It's easy to become frustrated with your child or physicians when you don't fully understand their disease diagnosis. However, your frustrations can trickle down to your child, causing them unnecessary distress. Have regular conversations with your child and their doctor to understand your child's needs better.

3) Seek support

Caring for a child with a rare disease shouldn't be a journey you take on solo. It's essential to have people to count on when feeling overwhelmed and stressed about your child. There are several online forums and patient advocacy groups you can join for free. Connect with other families who understand what you're going through and can share their experiences with you.

4) Stay hopeful

Lastly, always strive to be positive and aim for the future! Continue to hold hope that a cure or treatment is found for your child's disease. Your child may feel hopeless and angry at times, so you must uplift them constantly and motivate them to enjoy their life to the fullest.

Remember that you are your child's hero, and they expect you to love and care for them. You will experience many difficult times parenting a child with a rare disease, but there are many ways to make the journey smoother. You're a strong individual caring for your child with specialized needs, so applaud yourself for your hard work!

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