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    • #18673
      Libby
      Participant

      Hi all – this article popped up on the news and even though it’s not directly related to PH, what this woman has gone through I am sure resonates with all of us quite a bit! I really feel for her and her experience of brushing her symptoms off as “stress”. Happy reading!

      https://www.msn.com/en-us/health/health-news/a-ticking-time-bomb-young-womans-warning-after-a-deadly-condition-she-had-since-she-was-a-baby-went-undetected-for-36-years-and-the-signs-she-knew-it-wasnt-just-stress/ar-AAECl3X?ocid=spartandhp

    • #18686
      Colleen Steele
      Keymaster

      Libby, thank you for sharing this article! My son went misdiagnosed for 2 years and often wonder how much longer that would have gone on if his dad and I didn’t keep insisting that something was being missed. This woman’s story is quite remarkable considering how long she survived without medical treatment. My son was in heart failure before he received his transplant and it is a scary a painful experience. I’m glad her story ended well because like she said, not everyone’s does.

    • #18702
      Brittany Foster
      Keymaster

      Hi Libby !
      I can 100% relate to this unfortunately ! I feel like a lot of people (especially doctors) are so quick to jump to the mental illness diagnosis instead of getting to the root of the problem. If there isn’t any history of illness and everything is coming back okay, then suggesting a mental health diagnosis is one thing, but ONLY AS A DIAGNOSIS OF EXCLUSION meaning that they HAVE excluded all the major things that it could be. The ER completely missed the fact that blood was being stolen from my brain for years and they missed my oxygen levels dropping to dangerous % until they were like “woops something is wrong” and that is when I took my care elsewhere and decided to fight for myself and be my own advocate. This is something that really drives me to advocate for myself and others! Thank you for sharing this. If you want, you can also read the article that I published about “When Doctor’s Told Me It’s All In My Head” I published this a little over a year ago onto my column Recharged and Rewired for PH News. I’m sure many can relate to it too.

      • #18720
        Colleen Steele
        Keymaster

        Wow Brittany, I hadn’t read this article of yours before and it is excellent! You really expressed well the sad experience that so many have had prior to diagnosis.

        • #18745
          Brittany Foster
          Keymaster

          Thank you for taking the time to read it, Colleen!I think it is important and others definitely would be able to relate. It keeps me from speaking up when I know there is something going on with my body. It is taking me a lot of talk therapy and being reassured that I’m NOT crazy to just be able to have an honest conversation with my doctors without the fear of feeling like I’m going to be looked at as “insane” or “needing behavior therapy” prior to diagnosis I heard that WAYYY too many times ! Just the mention of CBT sends me into anger.

    • #18723
      Libby
      Participant

      Great article Brittany, thank you! What’s even more frustrating is when your health issues are congenital and you know about them, so it’s only reasonable to believe your symptoms are related to your already-existing issues but your doctor deems them ‘unrelated’.

      • #18746
        Brittany Foster
        Keymaster

        Libby,
        I have a few conditions besides CHD that I was born with. One of them has greatly impacted my central nervous system because it had a direct effect on my brain and spinal cord so a lot of my autonomic nervous system conditions I have been trying to manage since I was a little kid, they just got worse and worse over the years because I don’t think they were ever truly managed properly until now when all the genetic testing has been done and they are finally realizing for themselves “wow, this is actually all connected and makes sense”. Only a few of my really good doctors actually grasp this though . The others just seem to keep looking for more problems. At least that’s how I feel sometimes .

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