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Standing Strong with Shahni - A Journey with hEDS and Complex Conditions

  • Gastroenterologist Visit

      6 December 2025

    Last month 20th November Shahni visited the Gastroenterologist Dr Liz Phillips who was lovely to deal with.

    Very informative visit, and we came away with a lot of additional info and further steps to take.

    The plan is as follows.

    - Nutritional bloods to be taken

    - Refer to a specific Dietitian that specialises in EDS.

    - Motility study (check how well food progresses from mouth to stomach)

    *Gastrografin swallow, or an Alimetry test if unavailable*

    - Aggressive management of POTS

    - Physiotherapist that specializes in EDS

    - Prescribed Fludrocortisone and gauge. May need Ivabradine.

    Liz also described hearing a leaky heart valve and wanted to get this re-checked.

    - Echocardiogram given Marfanoid features & systolic murmur.

    The above are all additional steps to take over and above her other compressions that she has. After this, hopefully we will have an overall total picture, of all of the challenges that Shani has been dealing with.

    Much love everyone.

    Once again, thanks for all your support 🙏❤

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  • Rheumatologist visit

      6 September 2025

    Last Friday Shahni visited her rheumatologist Dr Fraser Burling.

    A lovely man to deal with, cares deeply about his patients, and is super knowledgeable.

    Shahni had some joint issues addressed and discussed how a medication trial went for hers POTS symptoms (heart).

    She was to trial two lots of medication.

    The first med Sodium Cromoglycate would help with the uptake of the second, but had to check for a reaction which she was fine with.

    She then trialled the Midodrine which unfortunately she did have a reaction to. Pain / pressure at the back of her eyes & was struggling to see properly.

    So, she has stopped the Midodrine, but is increasing the Sodium Cromoglycate.

    What's next?

    Waiting to hear back from Australia & Germany.

    And..

    Another specialist appt in Waikato with a Gastroenterologist.

    ❤

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