Physician, clinicians , gastroenterologist, immunologist, psychologists needs to educate more in EDS. My Saarah had GI problems since November 2019 ongoing and was admitted to hospital for a week. The docters conducted a CT scan & suspected colitis.
However, colonoscopy was not safe for Saarah because of the delicate skin that cuts easily, neither an endoscopy a safe procedure.
So the A&E doctor’s discharged her and said she was better. The flare ups were calmer and discharged and was told that she will receive an outpatient with the gastroenterologist. We waited over 3 months, no appointment so I called the GP and GP said he will send another referral. Suddenly Lockdown started stillawait. Saarah kept calling GP and they prescribed Buscopan and increase painkillers and said if it gets worse to go to A&E.
After a lengthy wait one of the nurses called to book an endoscopy and Saarah explained that this procedure is not safe due to the fragility of her subtype in EDS.
After further wait a telephone consultation appointment 2020 August came and was told the doctor will call. Saarah did not sleep and was in hope of some light at the end of tunnel. Unfortunately when the doctor called from west Cumbria hospital- he lacked of knowledge in Saarah’s condition and were clueless. In fact after hearing Saarah’s GI complications & EDS itself he said this was something he cannot help and not within his power.
So he said he will send a referral back to home town and this resulted further months of waiting.
Until November 2020 a gastroenterologist doctor called and Saarah explained the ongoing problems so he said he will have to transfer her to Newcastle Northumbria. Saarah mentioned about the imaging system and after she herself researched about the capsule imaging: the doctor said perhaps that is the way but he will send an urgent referral to Newcastle. He also said if we do not hear by the next couple of weeks to call his secretary so he can start a treatment by prescribing medication assume it is colitis.
Unfortunately around January 2021 a nurse called and taken all the info and explained the capsule procedure and the like-hood of the capsule getting stuck .
So a dummy procedure will have to be taken first meaning further delays and she have to wait further 6 weeks. But nothing came in the post due to lockdown issues. In theory Everything became a lockdown delay and vulnerable people was being neglected.
We called the gastroenterologist doctor who was local and I had said my Saarah was deteriorating and if treatment could be started.
Eventually the treatment was given couple of day before she went in the hospital. Unfortunately by the time we got it and Saarah started it gave a allergy reaction because Saarah had MCAS meaning any food or new medication gave her a reaction.
Therefore after taking one tablet she stopped because her heart went fast due to POTs.
There was no sign of the capsule imaging procedure and sadly Saarah suddenly went yellow a week before she died and further to the blood test it came abnormal. Saarah was slowly deteriorating and I was helpless seeing my daughter slowly sinking. We went to A&E just after two day of doing the video on the rare disease day 27 February 2021
Saarah developed swollen knees, ankles, itchy skin, vomiting, headaches and A&E turned her down by saying it was EDS related as whole.
We went to the GP and they had arranged blood samples and just after few days around 1 March GP said her blood was abnormal and they will arrange a ultrasound scan.
The immunologist called on that day. Saarah had sleepless nights was in hope she may help but the immunologist said nothing to worry. Suddenly on 5 March 2021 we see that Saarah turned yellow. On that morning I called at 8am and GP called back after 11 am and said we have to go in A&E Saarah had high bilirubin level.
Once again spells at hospital was a nightmare. Inserting a cranula -needles were big , it was devastating episodes because of Saarah’s veins being very tiny and many attempts and pokes were apparent.
I did not like the way Saarah had to have 3 lots of blood taken and I realised that the doctor who had delivered the devastating news to Saarah was not mindful and the way language was used was disturbing to Saarah and me. He said patients with EDS Kyposcoliotic type have a short life expectancy and that Intimidated Saarah. After Saarah heard she said to me that “ did you hear that mum” that’s not nice.
deliberate direct message to a patient who have multiple other diagnosis means they are vulnerable causing trauma &distress. However my Saarah just went quiet and did not say anything after.
Unfortunately the ongoing bloods taken still abnormal and so many attempts of blood takings , we realise our Princess was leaving us and it was time to say our goodbyes and we said our farewell.
The capsule appointment came after she died.
https://www.newsandstar.co.uk/news/19233319.saarahs-mission-still-impact/
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