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Why do we have to donate blood for free? I understand it helps people, but this is a medical treatment. Shouldn’t insurance at least cover transportation or make it more accessible?
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Has anyone tried getting disability benefits for HH? I was told I ‘wasn’t sick enough’ even though my body is breaking down.
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 Which is INSANE. Why do we have to wait for major organ damage before they take us seriously?
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 I was denied because they said ‘phlebotomy is a treatment’ and I ‘should be fine.’ Meanwhile, I feel awful every day.
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If HH is genetic, why aren’t doctors pushing for family screening? Other genetic conditions get tested early—why not this one?
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Even my siblings weren’t told to get tested after I was diagnosed. I had to tell them myself!
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I had to FIGHT for a full iron panel. My doctor only wanted to check ferritin and said transferrin saturation ‘wasn’t necessary.’ WHY are we the ones who have to push for proper testing?!
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 Doctors act like ferritin is the only thing that matters, but transferrin saturation is just as important.
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My doctor said HH shouldn’t cause stomach issues, but I get nausea all the time. Is this just me?
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Nausea is the worst! My Dr. tried to tell me it was not a symptom of HH. That is only because it did not come up on his screen😂!
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Does HH make you wake up feeling like you ran a marathon in your sleep? I’m so sore in the mornings.
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What’s one HH symptom you never expected?
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Does HH cause headaches? I keep getting random ones, and I don’t know if it’s related.
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What’s something you wish doctors knew about HH?
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What’s the worst HH fatigue has ever hit you? I fell asleep sitting up today. 😴
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