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ABOUT ME


 

Hi my names Isla Evans. I am 31 years old and live in the North East of Scotland with my Husband and full time carer Sean and my 2 beautiful children. Dylan is 7 and Ellie-Louise is 3 they are my world.

I was diagnoised December 2014 with Sma Syndrome after over a decade of suffering with abdominal pain and nausea. For years Gp woud tell me it was just anxiety and all in my head or it was an eating disorder. I was neer getting anywhere and fed up of constantly neing in pain so i changed Gp practice. I was seen by my new Gp and sent to the psychiatric department for an assesment as my notes read Anxiety and Depression. I refused to go for a while as i knew i wasnt mad the pain i felt was real. After lenthy descussions with my Husband and my Mother i eventually agreed to go. The assessment took 45minutes. I felt very ashammed but the results were no mental health issues and no eating disorder. I felt elated it was proven the pain must be real as i wasnt mad!

I was then refered to the Gastroenterologist department at my local hospital here. I was seen as an Outpatient and it was agreed i would be put for a Barium meal with ft and a gastroscope. The appointments came in quick as i was then being seen as an emergency patient. I was very nervous before the tests which were done just a few days apart. The barium meal was over pretty quickly the gastroscope again wasnt too bad either but i was glad to get home.  I was seen again in clinic and my results showed i had a dilated duodenum and possible diverticulum pouch which was pretty large. I was sent to Aberdeen Royal Infirmary to be seen by a specialist for his input in my case.

While waiting for my appointment to be seen in Aberdeen i had a sigmoidoscopy done here in Elgin which again didnt show very much.

I finally received my appointent to meet with a Dr Mckinlay in Aberdeen. first impressions were he was very nice. this changed drmatically when i left my appointment. He told me it was all psychological and i needed meantl health help and he would refer me to Cornhill.

When i arraived back to Elgin my husband spoke to my consultant here who apologised for what had happened and agreed to preform a CT Scan. I went along on the 4th December for the scan. i remember feeling so nervous and scared. The machine was way bigger than i had imagined but the actual scan was fine. Only proplem was my canula kept blowing it took 4 attempts before they got a vein for the dye.

I met with my consultant a week later on the 11th December where i was eventually diagnoised with Sma Syndrome. He explained to me that the SMA was compressing my duodenum which was making it swell and dilate as food struggled to get through. hence my severe pain and sikness. He thought that increasing my nutriton would help as if i could gain some weight then maybe the artery woud mve up off my intestine. I was struggling with the Ensure drinks and struggling with solids due to pain so he decied to re-do a gastroscope to have another look. This was repeated on th 18th of March (my husbands birthday) I was seen again in clinic in April where my consultant wondered if a DDJ would benefit me. I had been in touch with a Prof Sandmann in Germany and we decided to hear back from him (i had ordered and paid for a copy of my CT Scan images and sent them to him).

Dr Sandmann confirmed i was suffereing from SMA Syndrome and also Nutcracer Syndrome. (Nutcracker is when the SMA compresses the left renal vein). He suggested i go to him for him to operate to Transposition of SMA.

Currently i am trying to raise £16000 so i can travel to Germany for this life saving surgery.

Without this surgery my intestines will sht down i will have intestinal and renal failure. There is no specialists for SMA Syndrome in the UK i am currently only the 2nd case in SCOTLAND.

 

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