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I have a disorder called dopa-responsive dystonia that is very rare but also, miraculously, very treatable. I take a very low dosage of dopamine once a day and I can live my life with no interference whatsoever. Without the meds I can hardly walk, really, no walking. The rareness of this disorder means that I have never met another person with it, and when we began thinking about having a family it was topmost in our minds. There is very little literature out there that addresses the inheritability of the disease or the effects of the medication on a pregnancy. Fast forward over four years, we made our peace with the info we could find, determined that our daughters could inherit it but luckily it would also be entirely manageable with medications and had two perfect pregnancies and two amazing babies.

I went to see a new neurologist yesterday. The DRD is so managed that she looked me over and declared me fine until my next yearly check-up (and she is an expert in this field so I trust her opinion).

After my brief check-up she told me about a young couple who had been in her office one day earlier. The woman has DRD, takes the same dosage of medication I do, and is terrified to get pregnant. She is fearful of the effect of the medicine on the pregnancy (to be clear, the very few case studies have indicated no concern whatsoever, there are just very few pregnant women who take the medication) and scared of what the disorder means for her future kids. My doctor asked if she could put the couple in touch with me.

I am by nature a worrier and the chance to offer another worrier some pretty concrete reassurance means the world to me. I think I have pretty solid evidence to offer her.