Living with HUVs: My first Blog

Monday 18 April 2011

My first Blog

So where do I start.....

Firstly hello!!!!

Ok, so why have I set up this blog??? When first diagnosed with a rare condition it is extremely hard to find others who are experiencing the same as you let alone be able to recieve support through conversation and experience.

After months of trying I thought why not be the support and set up something that can not only explain how it feels to have the condition but also explain the impacts and choices that are made to accomodate the changes that are required.

I will endevour to be up beat but the aim of this blog is to be realistic so there will be days when I whinge or moan but they will be few.

I will be discussing family life, daily routine and endless medical trips. This is all part of HUVs.

I am new to this, so with help and a little time I intend to get as much informatiuon and supporting tools on this blog as possible.

Thank you for reading my first attempts and I look forward to you adding your comments

Sarah

3 comments:

Kerry18/4/11
Good for you lovely! I think you have found your calling ;) xxx
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goof my little slice of life18/4/11
keep it up, keep it coming. and DOUBLE good for you x
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1 mum, 2 children, 3 cats and a French life10/8/11
Hi Sarah,

My husband has been diagnosed wtih HUVs (last week) after 20+ months. We now live in Somerset, and I would love to know which hospital/professor is treating you as so few medics have come accross this illness
thanks, Eliana
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HUVS - what is it?

Hypocomplementemic urticarial vasculitis: Hypocomplementemic urticarial vasculitis: A rare condition characterized by the presence of recurring urticarial vasculitis, arthralgia or arthritis and hypocomplementemia. Hypocomplementemia involves a reduction or absence of blood complement which is a part of the body's immune system which destroying invading bacteria or other pathogens. More detailed information about the symptoms, causes, and treatments of Hypocomplementemic urticarial vasculitis is available below. Read more at http://www.wrongdiagnosis.com/h/hypocomplementemic_urticarial_vasculitis/intro.htm?ktrack=kcplink this information is from wrongdiagnosis.com

Hi, My name is Sarah and I have HUVs

Hi All My name is Sarah and I was diagnosed with HUVs earlier ths year. Like any normal person I immediately tried to find out more information but it was very limited. After exhausting my search I thought about a different approach, why not create a blog that can help and support others who find themselves with this rare and confusing condition. So here I am.... The aim of this blog is to give a realistic view of how my life has changed and what me, my family and friends experience on the journey.