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Parenting a Child With a Rare Disease: Fighting for Quality Medical Care

When your child has a rare disease, as a parent, you face a multitude of significant challenges. Rising to meet these challenges, day after day, can make you feel like a prizefighter going 50 rounds with the heavyweight champion of the world. In addition to trying to obtain appropriate expert care, there are the financial and logistical hurdles, the social and emotional effects living with the condition has on your child and on you, as well as the effects the situation has on your other children. It’s one blow after another.

Out of all the challenges you face, the first one to address is the quest for quality medical treatment. And the first step of this task is to obtain the right diagnosis – often a near-insurmountable undertaking. You have to be your child’s champion and support system during a journey of endless tests that lead to no answers, while you watch his suffering continue or worsen. But as you keep pushing the doctors to continue looking for a cause, you now find another obstacle – the negative consequences of insisting on more tests. Now you have to navigate the annoyance of the healthcare providers. And in too many cases, your assertiveness leads to suspicion. Your child has anxiety, you are abusive: she is put into a psych program, or he is taken away and put into foster care. Now they have to deal with an illness without your comfort and support.

Parents of rare disease patients are expert medical researchers, and that is no easy task. You have no medical training to guide you and therefore, no criteria to ascertain what is good information and what is garbage. And once you have done this exhaustive research, and you have intelligent questions and discussion points, healthcare providers often do not take it well. They may even become hostile. You are a high-wire act, walking the tightrope between fighting for your kid and not alienating providers in a position to get them help.

Which leads to the emotional hurdles…stay tuned.

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