Diabetes Insipidus and me - an 8 year old's story

The Pituitary Foundation is supporting Rare Disease Day to help raise awareness about rare diseases and their impact on patients' lives. One of our youngest fundraisers, 8 year old Taylor, tells us his story of being diagnosed with D.I....

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Hello! My name is Taylor. I am in year 4 at Dearham school and I would like to raise awareness of something that many of you might not of heard of. It is a rare condition affecting 1 in 25,000 people, and I am one of them…….

 

Taylor

 

I have a condition called DIABETES INSIPIDUS (DI for short) and I would like to tell you about it…..

When anyone hears the word ‘Diabetes’ they assume that it is to do with my blood sugar. It isn’t! They should not be confused.

I have a tumour on my Pituitary Gland inside my brain. This is why I have DI.

I don’t secrete a hormone called ADH (anti-diuretic hormone) which tells your kidneys how much water to keep in my body. My body tries to get rid of all of the water which causes me to drink excessively and need to wee all the time. This makes me very ill, and before I was diagnosed with DI I was really poorly. I was up all night drinking and going to the toilet. 

I take a drug called vasopressin 3 times a day which helps to control my thirst and urine output. If I miss a tablet or take it at the wrong time, all of my symptoms start again. I have to have MRI scans on my brain every 3-6 months to check that my tumour hasn’t grown.

I have lots of blood tests too, I didn’t like them at first but now I am really brave! There are 5 special doctors called consultants that look after me, and carefully study the pictures of my brain after each scan. 

I get side effects from my medication sometimes, I can feel emotional, weak and tired. But I don’t let it stop me doing all the things I enjoy like football and golf. I hope I can create awareness of my condition and also raise some money for the Pituitary Foundation.     

Taylor

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Taylor has already made it clear that he is very keen to help us raise funds for pituitary patients. His family have set up a fundraising group in Cumbria (see above) and we are really excited to have them on board with us. Their recent 'Go Orange' event at Taylor's school raised £525! We wish you lots of luck Taylor and thank you so much for your enthusiasm!

 

Want to get involved with rare disease day? Click here