Undiagnosed and rare conditions
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Welcome to our discussion group for rare and undiagnosed conditions

Chris_ScopeChris_Scope Member Posts: 695 Pioneering

Rare conditions affect more people than the name might suggest, though if you have one then you may well feel alone at times. But as Shona Cobb said recently in her excellent guest post about living with Marfan syndrome: “Each rare condition in itself is truly rare but such conditions collectively are not since it is estimated that 1 in 17 people have one, so I’m not alone in suffering with an uncommon condition.”

That’s why we wanted to create this space for those with rare conditions to share their experiences and advice.

Likewise, for anyone with an as yet undiagnosed condition, the experience can be upsetting and unsettling in equal measure. This group is also for anyone without a diagnosis to share their experiences and support with people in a similar situation.

If you’d like to share your experiences or ask advice about anything related to rare or undiagnosed conditions, simply click the ‘new discussion’ button at the top right.

Replies

  • RolandRoland Member Posts: 34 Courageous
    I would like to create a new thread in this discussion. I'm working on a smart phone and cannot see the 'new discussion' button?
  • Sam_ScopeSam_Scope Member Posts: 7,732 Disability Gamechanger
    Here you go Roland :)New discussion.
    Scope
    Senior online community officer
  • wildlifewildlife Member Posts: 1,316 Pioneering
    I have an undiagnosed condition and despite reading extensively I have never heard of anyone with the same or even a similar problem. I had my gall bladder removed at a very young age before keyhole surgery was used. Then I had keyhole to divide adhesions round my liver. I opted for a spinal anaesthetic so was awake throughout. There was a lot of pulling and pushing and since then I have had a spasm high up beneath my ribs that hasn't stopped for 24 years. This movement continues up through my chest into my mouth and becomes more and more uncomfortable as the day goes on. I had a endoscopy years ago that showed  a problem in my small intestine where the peristalsis was going down one way and up the other to meet and that is where the spasm is. My physio has also located an area that is narrowed like the middle of an egg timer. I never feel hungry and am permanently bloated. I would love to hear from anyone else with even a similar problem...
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