Living With a Rare Condition

Elin Wahlstedt is from Sweden. Here she shares the story of how she discovered she has a rare medical condition that makes her dependent on TPN.

“Everything started when I was four. I don’t have any memory of it but I’ve heard my parents and doctors tell the story.

Apparently I suddenly got really sick and spent eight weeks doing nothing but throwing up. My parents soon came to the conclusion that this wasn’t some ordinary virus or bacteria so my mum took me to the local hospital. It was a late evening and they kept us in overnight to do lots of different tests. In the morning confirmed my parents’ suspicions: it wasn’t a virus or a bacteria. It was a tumour.

Having been transferred to another, bigger hospital for more tests, my parents got prepared for the worst. But so far all they could say with certainty was that I had a tumour in the lower part of my stomach.

We spent weeks and weeks in hospital doing different tests every day. One of the tests was a biopsy on the tumour to see if it was cancer or not.

It wasn’t.

It was something stranger than that.

It took a big surgery – opening up my entire stomach – for me to get my diagnosis: lymphangioma in the mesentery. This means that my lymph nodes are enlarged. This leads to leaking holes in my small intestine and a big malformation where the doctors thought I had a cancerous tumour.

Once I’d recovered from the surgery we were transferred back to our local hospital where my doctor tried to find anyone else in the world who dealt with the same issues as I did, anyone who had the same diagnosis.

He couldn’t find anyone.

He could find people with lymphangioma or people with the leaking small intestine but no-one who had both.

This marked the beginning of a life of testing new medicines, treatments, being part of science groups and plenty of research. There were loads of different types of therapy and we were always trying new things. Every Monday was ‘hospital-day’ and usually something new came up that kept us in overnight.

I was probably about seven years old when my doctor decided that we should try TPN. At this time I had been tube fed for many years and had severe stomach aches, nausea, constant vomiting and I was sleeping basically all the time. The TPN transformed all that. Not over night, but in time. I got my energy back, I stopped the vomiting and most of my stomach aches disappeared. But instead there was a new obstacle: how do we treat this at home?

It took a while, many days spent at the hospital so my mum could learn how. But we got home. However, I wish I could say that we stayed home but that is quite far from the truth. I got a port-a-cath when we started with the TPN and since then I’ve had to change ports nine times. All but one of those times was because of blood poisoning.

Sometimes, when I look back or when I hear my parents tell me something about how my life used to be I do question how I’ve coped with all of this. Why I haven’t just given up, because my life is far from easy.

The answer to that question is rather simple, though, because I honestly don’t know how I’ve coped. Obviously I have rough days when I feel like life is just really unfair but I can also see the beauty in life. Every day is a new challenge and I embrace it.”

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