About Take Us Seriously

on 03 21, 2010

Founded by a patient who sought a correct diagnosis for more than 30 years, Take Us Seriously is a non-profit organization that helps undiagnosed and misdiagnosed patients.

In addition to this blog site, the author is compiling patient stories for a book. If you would like to provide examples of how doctors’ decisions impacted you positively or negatively, and ideas for how your situation could have been improved, please read Share Your Stories.

To read more about the author, look for posts in the A Patient’s Perspective section.

Comments (7)

 

  1. Wonderful site! So glad you were able to finally get a validating diagnosis….I totally understand your journey to a diagnosis.

  2. Ellen says:

    Thank you very much, Susan! I’m glad you posted a comment, as I hadn’t seen your site yet — as I read through it, I learned more about the symptoms of Dercum’s than I had previously. Thank you for such a nicely organized and informative site, and I wish you all the best.

  3. Joanne says:

    Hi, there’s a new program helping patients with undiagnosed conditions. Please share this information to those in need!

    Casting a new series on a major cable network:

    Looking for candidates with undiagnosed medical ailments…

    WHAT’S WRONG WITH ME?

    All across the country people have mysterious illnesses preventing them from moving on with their lives. Often at their wits’ end, most doctors have written them off. Dr. Eric Braverman, a brilliant New York City doctor, and his team try to diagnose these problems. Through therapy and cutting edge technology and tests, Dr. Braverman and his team determine what is wrong.

    Looking for Candidates in the New York Tri-state area who would like a free medical evaluation and possible treatment.

    If you or someone you know are suffering from a mysterious illness

    Please send us an email here and tell us your story:

    parkslopecasting@gmail.com

  4. Ellen says:

    Thank you, Joanne, for letting us know about this new upcoming series, and recommending helpful resources.

  5. Aviva says:

    Thirty years searching for a diagnosis? Oh man! I’m five years in and still searching. I’m glad you found your diagnosis, and now I’m going to go explore your website. 🙂

  6. Lesley Bennett says:

    Your website is wonderful! I’ve been advocating for patients (mostly children) with rare and undiagnosed disorders for the last 25 years. Thank you for posting all this useful information–it is a godsend to many families and patients who’s illness lacks a specific diagnosis.

    Although my 27 year-old daughter is technically among the “undiagnosed” her underlying disorder is classified as a rare inborn error of metabolism–she wasn’t supposed to survive her 3-rd birthday! With the help of some really wonderful physicians we stumbled on a diet that works for her–the diet wasn’t able to reverse the neurologic damage that she suffered in the first 2 years of her life but it has dramatically slowed down the natural progression of her own disorder. At age 27 she has outlived all medical predictions and although she is unable to sit up, walk, or talk, she enjoys LIFE–watching TV/movies, shopping for pretty clothes, playing with her dog, laughing with her family, and ogling handsome boys/men!
    Since many of our daughter’s original physicians have retried or moved to non-clinical jobs, we’re now having problems getting a group of younger physicians (who are used to being able to LOOK UP everything and have not been trained to “think” outside the box) to work with us or wrap their heads her unusual diet.

  7. Ellen says:

    Thank you, Lesley, very much for your post. I wish you and your daughter all the best.

    I don’t know if it could help with some of her neurological problems, but you might want to look into Calmare (the technology is available in more places every day but this doctor was exceptional: https://calmaretherapynj.com). It can “undo” messages of damage sent from the peripheral nerves to the brain. Also high dose magnesium malate helps the nerves function at their best.

    You may wish to check out my Facebook page for Undiagnosed Day — I often post helpful resources, and am trying to get a global recognition day for the undiagnosed created through a petition to Oprah.

    If there’s ever anything I can do to help you, please don’t hesitate to contact me.

    Ellen

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