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@loribmt

Welcome to Connect, @pixiesusan. When you have an uncommon diagnosis it can be so helpful to be able to talk with others with similar condition. As you’ve already seen, @audreyl23 @j68eis @mlarneson and @thipley have been sharing their experiences in the forum. I hope they’ll be able to help you out with your questions.
You mentioned your platelet level runs low and you’re constantly exhausted. Is your hemoglobin also on the low side?

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Replies to "Welcome to Connect, @pixiesusan. When you have an uncommon diagnosis it can be so helpful to..."

Not so far, it's been in the normal range since diagnosis. I feel they are preparing me for a change because they mention it more in my appointments. But so far so good. My platelets are at about 30. I get another round of blood work next week.