What the HHT?

A Voice for the HHT Community

Public Gets a Little ‘Clarity’ on HHT

7 Comments

By Lauren Linhard – [email protected]

A patient shows up in the ER with shortness of breath, nosebleeds and visible blood vessels on the tongue. It’s a story those of us in the HHT community almost know by heart. But for the more than 8 million viewers who watched “Chicago Med” on February 16, it most likely was the first time they had heard of Hereditary Hemorrhagic Telangiectasia.

Who else jumped off their couch when the doctors oh-so-casually mentioned HHT as the most likely diagnosis? I know I did. Even though HHT is part of my everyday life, it was such a shock to hear the disease mentioned and explained on public television…to more than 8 million people.

Of course I was yelling things like, “Mention it’s genetic!” and “He could have lung AVMs!” at the screen. And at first I was disappointed in the boiled down explanation of the disease.  But you know what? Nosebleeds – the number one symptom the general public can relate to – was mentioned as a symptom of HHT, and more than 8 million people heard it (sorry, I can’t get over that number).

Imagine the amount of people you could reach about HHT by sharing your story with local news channels and publications. All it takes is one voice to make a hundred, and then a thousand, and then…maybe 8 million. You have the power to answer, “What the HHT?”.

>Click to watch the episode

>Email Lauren about sharing my story

7 thoughts on “Public Gets a Little ‘Clarity’ on HHT

  1. I love the whole Chicago Med, PD and Fire series. I was like you and jump up when I heard HHT. I was hoping they would have spent a little more time talking about the various symptoms but then I realized how huge it was to get have HHT mentioned in prime time. The last time I heard it mentioned was during a HOUSE episode many years again. Baby steps to a big win.

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  2. I am a binge watcher of the Chicago series.

    So I watched hearing HHT was the Star of the show. Who had it? The guy with all the medical issues? The one that needed a transplant? The young person?

    So much good a name and explanation. But I wanted more. And the doctor got it quick but that was how my diagnosis went too. One look in my mouth and the doctor thought she had what was wrong with me. Took a picture to check with another doctor and the next week I knew. I hope they follow the story for awhile. A couple more trips to the ER or a family member.

    I remember when House had it on and I think I saw it on Mystery Diagnosis.

    Anyone know who the writer is I’m guessing we all could give additional follow up stories?

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  3. I watch Chicago Med every week but this week I was so excited to see that they had someone on with HHT. They explained it to where the public could understand it. My family has HHT and we need all the awareness we can get.

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  4. I don’t get a chance to watch a lot of TV. I think [2016] New Year ball drop was the last time. I just went and watched this episode of Chicago Med using the link above [Thank you].. I remember not too long ago a few years back how I thought it was going to have to be some big grandiose occurrence of the right thing coming together at the right time with the right event aaaaand BOOM!!! The world would have total HHT awareness and the struggle with the average Medical world being uneducated in HHT and a the pain of the public that never heard of HHT losing family members because they didn’t even know it existed would come to an end. That idea of the overnight HHT awareness was soon replaced when I saw people one after another step up to the plate and tell their local school or have a local blood drive or go on the local news or a cureHHT walk or a Night of Hope. Each important event causing vast public ripples of HHT awareness. [HHT.org] now CureHHT just year after year after year for so many years just hammering away and hammering away, using any foothold and advantage with no stone unturned tenacity, idea after idea to turn things around for the better and better. Sufferers, people, families, friends of families to many to mention for fear I would not give credit where credit is so due.. all working together, the HHT facebook pages growing bigger and bigger. We have lost many loved one’s and the loved one’s left behind just keep marching, shouting, giving, handing out information, doing all kinds of everything-athons to raise funds and awareness. All that has happened is staggering and because of how much has happened in the years past with everyone’s efforts, as a sufferer of HHT I must express deepest my most sincere gratitude and adoration.
    When I sit and witness a TV program and see them and hear them mention HHT in front of 8 million people to be totally honest I could not help but weep and realize that things like this happen because of all of you out there fighting and standing up and keeping it going and again my most sincere gratitude and adoration to you all. Thank you ♥

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  5. Thank you, writers, actors, and producers for raising awareness another step. i too remember that House MD episode, and thought it groundbreaking at the time. It certainly jarred me, and was quite the opposite of “boiled down”. It is encouraging to see it again, and on another popular show. Too bad ER and Grey’s didn’t pick up on HHT. We’ve seen HHT on The Doctors as well, and we need to see it on more real TV…Dr Oz?

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