Hypermobility Syndromes: The Hidden Pattern Behind 4 Separate Diagnoses.A chat with Dr John Campbell

Comments · 1.7K

• GG

  @gglav7170 · 2 months ago

  Can’t believe someone is talking about this. It’s all over my family. Bowel problems, migraines, back pain, hip looseness, constant injuries. It’s annoying as hell.

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• LO

  @louisewhittle1513 · 2 months ago

  Research is showing a very strong link between  hypermobility and ADHD.

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• CA

  @carolberry2239 · 2 months ago

  This is the problem with specialists...they don't see the person as a whole and don't even ask for symptoms totality.

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• HE

  @HeartandSoulAroma · 2 months ago

  Clinical low blood pressure is another symptom not recognised by the medical system

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• TO

  @TobyReadsALot · 2 months ago

  Important to note that it’s not usually the patient who thinks they’re going mad, it’s the GP trying to diagnose them with psychiatric conditions when all the tests come back normal. I’ve had a diagnosis of hEDS for years, and I still have to convince half the doctors I talk to that my condition is the underlying reason for problems and it’s not just that I’m an anxious hypochondriac or someone seeking attention and wasting their time. I was yelled at by a paramedic once for “having a panic attack” when my neck became unstable(I’m young and fit, and there was no fall, so there couldn’t possibly be a neck injury 🙄) and compressed a nerve and I lost the ability to walk or stand suddenly, which resolved itself about four hours later in the hospital. It sucks when you can’t get help for a diagnosed condition because no one believes your symptoms could possibly be real much less related.

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• AN

  @angierox6964 · 2 months ago

  My daughter-in-law has this and people think she’s a hypochondriac. She’s had to educate a couple doctors and you know how doctors love to be educated by people who have diagnosed themselves on the Internet! Lol.

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• PE

  @PerpetualStudent01 · 2 months ago

  Hyper mobility is also correlated with neurodivergence- being aware of that is critical for wholistic and effective treatment.

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• MI

  @MiljaHahto · 2 months ago

  "When you can't connect the issues, think of connective tissue." But the doctors just still don't think of it.

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• SA

  @SanctuaryLiving-pd1jc · 2 months ago

  And Mast Cell Activation Syndrome (MCAS) is common in EDS patients making it even more unpredictable!  Thanks for highlighting this foundational issue.

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• MA

  @MargaretDeakin-d6m · 2 months ago

  The UK NHS do not take Ehlers Danlos syndrome seriously. It is not equipped to follow the dots/investigate. The average GP treats symptoms on each visit rather than looking at the patients history./whole picture.Also, the average GP will choose to see a patient presenting with Ehlers as being anxious/having mental health issues.

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• LO

  @Loveitorleaveit777 · 2 months ago

  I was diagnosed in 2009, at age of 49 with EDS. I was seeing at geneticist because of Hereditary pancreatitis and possible pancreatic cancer genes After an exam the geneticist said, &quot;Well, you have Ehlers-Danlos Syndrome. &quot; i had never heard of it. He told me to go home and research it and it would probably make my whole life make sense. I did and it did and he was so right. From my &quot;big eyes&quot;, to scars, to no body hair (except on my head), to velvet skin, to constant subluxations and dislocations, to crooked front teeth, swan neck fingers and a high narrow palate. &nbsp;I have crazy veins and so much more. When I was a kid, I sat with my legs bent behind me with my feet over my shoulders and in my faith. I still, even though I&apos;m 66 now, and try not to, sit like a pretzel. I could do a back bend until my early 60s.<br><br>My diagnosis saved my mother&apos;s life. My cardiologist had told me that if I ever felt like I had been stabbed in the back to call 911 and tell them I have EDS and am most likely having an aortic dissection. &nbsp;At 80 years old, my mother (whom I knew also had EDS, though until that day had never had a proper diagnosis of EDS, walked down the hall toward me. &quot;I know this sounds crazy, but I feel like I have been stabbed in the back.&quot; I led her to her bed to lie down as I called 911. Less than an hour later she was airlifted to CMc in Charlotte NC where Jeko Madjarov, MD, of Sanger Heart and Vascular Institute performed an immediate intervention placing a device in the artery to help prevent and to repair the dissection. Because of my diagnosis of EDS, and my own excellent cardiologist, and because I was able to recognize that my mother had all the same characteristics as I did of EDS she lived another 5 years and saw her first great-great grandchild come into the world. I have classic and Vascular EDS.<br><br>I am a Zebra.

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• RA

  @radicalpeace9644 · 2 months ago

  I’m so incredibly grateful for you discussing EDS and hypermobility!!!! Thank you!!!!

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