I don't normally post family pictures here (or anywhere else on the internet), but I think that these two will be okay since they're already posted elsewhere. These are two pictures of my younger daughter Isla. The first is when she was about six months and in hospital (more on that later) and the second is from last week.
Isla was born with a very rare condition called Intestinal Lymphangiectasia. We reckon that about 1 in 500,000 people have this condition. In simple terms, the patient's lymphatic system doesn't flow fast enough around the gut to allow effective fat transfer. The upshot of this is that the fat builds up and eventually there is a rupture which allows the fluid from the lymphatic system to flow back into the gut. Unfortunately, this fluid contains lots of essential things (proteins, immunoglobulins etc.) and results in the patient becoming very poorly.
There is no way to pre-diagnose this condition. Isla was very, very lucky to have an extreme case very early in life (about 10 weeks) and to be taken to a hospital where the consultant had seen the condition before. Resulting in a very quick diagnosis, though it was touch and go and she spent a week in Intensive Care.
Isla had a setback a few weeks after being discharged from hospital when (without anyone realising) she contracted a gastro virus which she couldn't get rid off and which had the same symptoms as her condition. This resulted in a month long stay in hospital with Isla being fed through tubes as well as receiving constant infusions of various things that she was missing.
Amazingly, she made a complete recovery and is now very healthy. She will always be on a low fat diet and will probably always need supplements but we thank God every day for the help that he gave (lots of people spent a lot of time praying for Isla).
We have set up a website to offer some information for patients and their carers (there was nothing when Isla was diagnosed, which added to the horror of the situation) and to hopefully allow people to get in contact with others who are affected. The URL is http://www.primary-il.org.uk. We're hoping to create more awareness of this condition because we are acutely aware that if we hadn't been lucky with the doctors who saw Isla this might have been a very different story.
Here are the pictures (thanks for making it this far:smile:
Andy
Isla was born with a very rare condition called Intestinal Lymphangiectasia. We reckon that about 1 in 500,000 people have this condition. In simple terms, the patient's lymphatic system doesn't flow fast enough around the gut to allow effective fat transfer. The upshot of this is that the fat builds up and eventually there is a rupture which allows the fluid from the lymphatic system to flow back into the gut. Unfortunately, this fluid contains lots of essential things (proteins, immunoglobulins etc.) and results in the patient becoming very poorly.
There is no way to pre-diagnose this condition. Isla was very, very lucky to have an extreme case very early in life (about 10 weeks) and to be taken to a hospital where the consultant had seen the condition before. Resulting in a very quick diagnosis, though it was touch and go and she spent a week in Intensive Care.
Isla had a setback a few weeks after being discharged from hospital when (without anyone realising) she contracted a gastro virus which she couldn't get rid off and which had the same symptoms as her condition. This resulted in a month long stay in hospital with Isla being fed through tubes as well as receiving constant infusions of various things that she was missing.
Amazingly, she made a complete recovery and is now very healthy. She will always be on a low fat diet and will probably always need supplements but we thank God every day for the help that he gave (lots of people spent a lot of time praying for Isla).
We have set up a website to offer some information for patients and their carers (there was nothing when Isla was diagnosed, which added to the horror of the situation) and to hopefully allow people to get in contact with others who are affected. The URL is http://www.primary-il.org.uk. We're hoping to create more awareness of this condition because we are acutely aware that if we hadn't been lucky with the doctors who saw Isla this might have been a very different story.
Here are the pictures (thanks for making it this far:smile:
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Andy
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