“No, you don’t have it. It’s too rare”

April 26, 2023

You’re 24, you just had your first child 3 days ago and you’re feeling a little tired, a few hours go by and you call your doctor saying you feel like something may be wrong, they assure you it’s normal, you just had a baby. A few hours later you’re in the ER, diagnosed with HELLP syndrome, but a young doctor runs in the room calling out something you’ve never heard before with panic in his voice and a blood test is drawn, you are told you have TTP. He was able to catch it by having seen a young woman die of it years prior after giving birth. They let you know they’ll do everything they can but you most likely will not make it through the night because you waited too long to get help. Your body is shutting down and it’s a race against the clock. You’re given time to kiss your husband and say your goodbyes.

You make it but spend months in and out of treatments, chemo, and high dose steroids that changed your appearance unrecognizable. Covid means no visitors, your daughter is growing up without you, your husband is playing both roles. They say you’re refractory and you beg for a genetics test for months, advocating for your health. Finally they listen and turns out you’re right. You have CTTP. You went through life and health altering treatments, time away from your daughter, unable to breast feed and live your life because when you asked could you have CTTP they said, “no, you don’t have it, it’s too rare”. They tell you the city has never seen this and your case is out of their hands. You’re transferred to a specialist 6 hours away, you uproot your whole life to go get the help you need. Now you’re fighting to raise awareness for those who advocate for their own health, begging for a diagnosis that’s too rare to test for.

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