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The New York Times
The New York Times
The New York Times
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Where the conversation begins. Follow for breaking news, special reports, RTs of our journalists and more. Visit http://nyti.ms/2FVHq9v  to share news tips.

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    The New York Times‏Verified account @nytimes Jun 20

    For the past 3 years, she hasn’t been able to keep anything down. There’s no evidence of a parasitic infection, and her liver, pancreas and kidneys are functioning normally. Her doctors don’t know what’s going on. Have you heard of these symptoms?https://nyti.ms/2tbLzhA 

    7:02 PM - 20 Jun 2018
    • 161 Retweets
    • 289 Likes
    • Douglas R Dolleman Becky Clark J E R R Y🔥▫▪◼ Shaikh Mohammed Saad Nery Gainor-Realtor Aliza Luv Binford Applied Homeopathy Clinic औषधि-उपचार केन्द्र C.N. Khadga🇳🇵 Ankit Yadav
    140 replies 161 retweets 289 likes
      1. New conversation
      2. Rebekah‏ @GoodGatsbyy Jun 20
        Replying to @nytimes

        my twin has this, we have Ehler's danlos syndrome.

        4 replies 0 retweets 20 likes
      3. Rebekah‏ @GoodGatsbyy Jun 20
        Replying to @GoodGatsbyy @nytimes

        For real, genetic condition, symptomatic throughout life, but GI issues for the last 2 years. Hypermobile Oesphagus and Gastroparasesis. MCAD. Laryngospasm. Effortless regurg hours or minutes after.

        4 replies 0 retweets 18 likes
      4. Gautham‏ @deathcruzer999 Jun 20
        Replying to @GoodGatsbyy @nytimes

        Simple genetic testing and family history would have confirmed EDS rite?

        2 replies 0 retweets 1 like
      5. Rebekah‏ @GoodGatsbyy Jun 20
        Replying to @deathcruzer999 @nytimes

        Family history yes, and a VERY specific criteria for H-EDS. Genetic testing is available for certain types. Sadly, they haven't identified the gene for H-EDS but my twin, mother and I all have the signs, FH, and medical history

        1 reply 0 retweets 5 likes
      6. Rebekah‏ @GoodGatsbyy Jun 20
        Replying to @GoodGatsbyy @deathcruzer999 @nytimes

        some examples: physical features: stretch marks, type of scarring, papules on the (often flat) feet where the fat tears through the epidermis. Even the way your eyelids fold/slant (cant remember the term). Dental crowding. My specialist could subluxate EVERY joint in my body.

        2 replies 0 retweets 1 like
      7. Gautham‏ @deathcruzer999 Jun 20
        Replying to @GoodGatsbyy @nytimes

        I am sorry to hear that . How do you manage it?

        3 replies 0 retweets 0 likes
      8. Rebekah‏ @GoodGatsbyy Jun 20
        Replying to @deathcruzer999 @nytimes

        It's almost a blessing to have a twin going through it to. We support each other when the other one is too unable. We chronic illness you will have times when you are better and times when you are worse.

        2 replies 0 retweets 11 likes
      9. Greg (Not the Golfer) Norman‏ @Raelshark Jun 20
        Replying to @GoodGatsbyy @deathcruzer999 @nytimes

        That's both heartbreaking that you both have it, and also kind of amazing that you're able to be there for each other. Although you wouldn't wish it on anyone else, it has to help a lot to have someone to go through it with... (I have H-EDS too. And now so does my daughter.)

        2 replies 0 retweets 3 likes
      10. 4 more replies
      1. New conversation
      2. Keith Sunderland‏ @keithsunderlan3 Jun 20
        Replying to @nytimes

        I am not saying this as a joke but have they tried medical marijuana because it is known to be the only thing to help chemo patients actually keep food down

        3 replies 0 retweets 20 likes
      3. LouiseMarieE‏ @louise_q10 Jun 20
        Replying to @keithsunderlan3 @nytimes

        Just don't go to Canada and try to come back because Jeff sessions wants to drug test peoplepic.twitter.com/oTEDWLAYlj

        0 replies 0 retweets 3 likes
      4. End of conversation
      1. good politics haver‏ @magicdonhuang Jun 20
        Replying to @nytimes

        She needs to smoke weed

        0 replies 1 retweet 10 likes
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      1. New conversation
      2. PJC‏ @pjchatfield Jun 20
        Replying to @nytimes

        YES... SHE MAY BE HAVING INTESTINAL VASCULAR SPASMS FROM PRINZMETAL'S ANGINA. HEREDITARY, NO TRACE IN C.T. SCANS. CAUSED BY ARTERIAL OR VASCULAR SMOOTH MUSCLE SPASMS. ANY CALCIUM CHANNEL BLOCKER (AMLODIPINE) TREATS PRINZMETAL ANGINA VERY WELL. SHE CAN DISCUSS WITH HER DOCS.

        1 reply 0 retweets 1 like
      3. LouiseMarieE‏ @louise_q10 Jun 20
        Replying to @pjchatfield @nytimes

        pic.twitter.com/wYy91tRr3h

        1 reply 0 retweets 10 likes
      4. LouiseMarieE‏ @louise_q10 Jun 20
        Replying to @louise_q10 @pjchatfield @nytimes

        Unnecessary yelling

        0 replies 0 retweets 2 likes
      5. End of conversation
      1. New conversation
      2. Boston‏ @Sassachusetts_ Jun 20
        Replying to @nytimes

        Dysautonomia. 99% sure. @Dysautonomia

        1 reply 0 retweets 3 likes
      3. Greg (Not the Golfer) Norman‏ @Raelshark Jun 20
        Replying to @Sassachusetts_ @nytimes @Dysautonomia

        Well, they tested for POTS and found it positive, so yeah. But treatment didn't help. (Although it doesn't always.)

        1 reply 0 retweets 2 likes
      4. Boston‏ @Sassachusetts_ Jun 20
        Replying to @Raelshark @nytimes @Dysautonomia

        I’ve been treated in that hospital. They don’t know much about dysautonomia or treating it. She needs to see a specialist and the biggest problem is that Utah only has 3 clinics capable of treating her (and me) correctly.

        0 replies 0 retweets 1 like
      5. End of conversation
      1. New conversation
      2. RNP‏ @allistairsdad Jun 20
        Replying to @nytimes

        Trump Awareness Syndrome?

        1 reply 0 retweets 15 likes
      3. 1 more reply

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