It’s important to remember there’s no “right” or “wrong” way to respond. Instead, give yourself time to process the news, and be kind to yourself as you adjust to your new situation.
Raising a child with an undiagnosed or rare disease takes a lot of emotional energy, but you're not alone. As a parent of a child with an undiagnosed or rare disease, you know how isolating it can be. You may feel alone and not know who to turn to in your time of need. But, it's important to remember that you’re not alone, and some people understand what you're going through.
Tips on approaching tough conversations
Navigating parenthood is a challenge for every parent. In addition to the standard twists and turns of parenting, parents caring for a child or children with a rare or undiagnosed condition face a minefield of uncertainty.
Here are 5 ways to help support your other children
Helping your child understand their condition, especially when it affects their ability to engage in childhood activities, can be overwhelming. Here are a few tips to help.
It’s almost impossible to imagine anything more frightening, upsetting, or frustrating than knowing your child is sick and no one knows why. Unfortunately, all you have are symptoms—no definitive explanation for what they mean. No name or label is attached to what’s making your child ill. Your child has a rare or undiagnosed condition.
All children need the same things to grow and thrive—love, safety and security, a healthy environment, and opportunities. However, if you’re raising a child with a rare or undiagnosed condition, you and your child will most likely have additional needs or encounter situations that other families don’t.
Support can come from various sources—friends, family members, and associates. However, receiving support from people with lived experience can be especially helpful.