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Thursday, 11 August 2016

Let's Talk About Nephrotic Syndrome


I like to use my own life experiences to help others. I'm constantly nattering on about my anxiety and depression, both to help myself and to raise awareness and reduce stigma, plus I opened up a little while ago about my dad's cancer story. I find that sharing experiences not only helps me to endure them - I almost use it like a sword and shield - but I like to think that it helps others too, even if it is only in a very small way. Today I'm going to talk to you about another health issue, one that plagues my favourite little human in the entire world - my little sister, Leigh. She is eight years old - nine next week! - and she has Nephrotic Syndrome.
 
Nephrotic Syndrome ; noun.
A kidney disease, characterized by oedema and the loss of protein from the plasma into the urine due to increased glomerular permeability.
Put simply, Nephrotic Syndrome is a condition that causes the kidneys to leak large amounts of protein into the urine. This can lead to a range of problems, including bodily swelling and an increased risk of catching infections. Nephrotic Syndrome can affect anyone of any age, although it's most commonly diagnosed in children between the ages of 2-5. Approximately 1 in every 50, 000 children are diagnosed with the condition each year. The symptoms of the condition are controlled with steroids, which will send the child into remission. Most children will experience relapses, though, and although most can be brought back under control with the aid of steroids, a small amount of sufferers may have kidney failure and need a kidney transplant.

Before Leigh was diagnosed almost two years go, I had never heard of the condition. The first indication we had that there was something wrong with her was the main visual symptom - swelling. She was always a petite child, tall for her age but willowy. She steadily began to gain weight, or swell, and although we noticed it didn't raise any alarm bells until she woke up one morning and one of her eyes had ballooned and swollen shut like she'd been punched by a champion boxer. My mum took her to A&E and following an examination, a few blood tests and a urine dip, she was diagnosed with Nephrotic Syndrome. She was put on steroids which controlled her condition for a time, but a few months later she relapsed. We noticed more quickly this time, as her face lost all definition and her ankles disappeared. Leigh has since suffered several relapses, and our main indication has always been the swelling. She quickly jumped several clothing sizes and even now can still fit comfortably in my women's size 8.

Another indication - and what was possibly the trigger for Leigh's Nephrotic Syndrome - was a throat infection. We have to be extra vigilant with any sore throat, cough or coldsore she gets as the nature of the condition raises her risk of catching anything nasty.
Once all of the horribleness of the condition is controlled by steroids, these symptoms disappear. But then, of course, there's the side effects of the steroids themselves. Leigh experiences horrific mood swings and a real increase in appetite when she's on her steroids. She will cry over any little thing, laugh carelessly the next minute and then scream and punch and kick you in anger and frustration the next. She has no real control over her emotions and impulses, which then causes her to become really upset as she feels so guilty about hurting one of us. Her increase in appetite has also given her some real body image issues. Of course we are grateful that the steroids control her condition and put her into remission, but it is incredibly, painfully difficult to live with for everyone, most of all Leigh.

We found out last week that Leigh has relapsed again and my mum and her dad have to make a pretty difficult decision as to which course her treatment is now going to take. Needless to say I'm going to make her birthday next week extra special! She's now on 18 tablets a day and we are waiting anxiously to see how extreme her side effects are going to be this time around. I hope that this post has given you a little inkling into the condition if you've never heard of it before, or has comforted you in some way if you also have a family member or friend that suffers with it, too.

If you like to read up some more on Nephrotic Syndrome, the NHS page is quite informative. You could also check out the fabulous NSTrust, which offers support and information on both their website and social media pages. You can also donate money to the NS Trust, which will help fund the treatment and research for a cure of Nephrotic Syndrome.

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8 comments:

  1. I had never heard of this condition before but honestly I got so emotional reading this! Your little sister, yourself and the rest of your family are so brave. No little girl should have to go through something as terrible as this! I wish you and your sister the best of luck for the future and I hope the side effects aren't too bad!! Xxxxxx

    Thrifty vintage fashion

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  2. This was a really interesting read. I have heard about nephrotic syndrome, but only because I'm a doctor! I enjoy reading posts like this, to know what conditions are really like outside of the textbooks or the hospital, what they're like day to day for real people.
    Jennifer x
    Ginevrella | Lifestyle Blog

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    1. Ah that is so great to hear! Thank you xx

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  3. Thankyou for raising awareness! I had no idea, and you've made me much more informed on the topic now.

    I'm so sorry to read how poorly little Leigh is! I hope there is a cure one day, as those steroids sound so difficult for an 8 year old to manage. She's so brave, and I'm glad she has such a lovely family to support and understand.

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    1. Ah, I'm so glad! Thank you so much <3

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  4. Oh, I've never heard of this before so thanks for sharing! I was watching your snapchat with Leigh on her birthday I think it was and she definitely looked like she was having a good day! Whenever you speak about Leigh I can tell you adore her. I wouldn't have guessed she was suffering from an illness like this, so it just goes to show that you can never assume anyone is perfectly okay! x

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    1. Thank you! She had a lovely little day, bless her: bowling and a barbeque at the stables! xxx

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