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Members' feedback

"I'm finding it shocking and surprising the number of new people joining the community. Let me explain. I was diagnosed with AVN first in both knees back in 2005, over the next few years it was found in both hips and shoulders. I had never come across AVN before and felt like I was the only person with it, I was always having to explain to people what it was."
 
"Thankfully I found this website and community over a year ago and realised I was not the only one suffering with AVN, it has been such a help talking to fellow sufferers who understand what I am going through."
 
Text taken from a recent post in our community forum.

Join us

If you are suffering from avascular necrosis AVN Osteonecrosis ON, or are close to someone that is, please consider joining our AVN Charity UK community. You will find many shared experiences about AVN and how it affects each of us differently, importantly there are also excellent success stories about the road to "Pain Free".
 
We also welcome any health professionals who are involved in any way with Avascular Necrosis AVN, please let us know how you think you can help.
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Avascular Necrosis AVN - A case study by the patient (the one in the know)

A regular monthly update on the progress of one of our members and their carer,.

Your comments are welcome, please use the "contact us" button and we will include it for all to see.


Avascular Necrosis AVN Osteonecrosis ON - Case study by the patient, the one in the know!

The first post and introduction. 7/10/14

Avascular Necrosis case study by the patient (the one in the know)Avascular Necrosis case study by the patient (the one in the know)This first post, Will explain who I am and the purpose of this project. The main reason for this topic is to create a chronological study of one person’s journey with AVN from that person’s point of view. I hope to make monthly updates on my progress that will include not only the treatments I have received but also my personal experiences and thoughts both good and bad. As well as the experiences trials and tribulations of my Wife Rose, who for better or worse acts unofficially as my career, carers being a much understated part of the journey with AVN.

The ultimate aim of this project is to provide an ongoing point of reference, for a journey through AVN that it is hoped will help new members to understand what has and may happen during this process. And also for people who have had the condition for a long time to be able to compare experiences. And ultimately to show that it is possible to live in spite of AVN.

A Medical history.

In order to understand how I come to have AVN and also how I have come to cope with it and the development of my current mind-set. I need to give you my brief explanation of my medical history. There are many people who may have had similar medical experiences, but at the same time many people with AVN have never been un-healthy and for whom there is no clear reason why some they have AVN and others don’t. In some cases such as AVN caused by trauma such as a broken bone there is a very clear cause. In my case the cause is likely to be factors arising from my complicated and long 37 year medical history. On the 5th of September 1977 I was born as a premature baby with under developed lungs, that subsequently developed into severe asthma in my early childhood, that caused me to have many repeated chest infections and in those days in the early 80’s a very popular treatment for severe asthma was cortisone {steroids}. I was on quite high doses of oral prednisolone throughout my childhood and as we shall see this would seem to be a major contributing factor to the development of my AVN.

When I was about 16 my repertory problems increased dramatically with repeated bouts of pneumonia that culminated in repeated heart infections as well. The lead to me at one stage being diagnosed with cardiomyopathy that caused a number of minor strokes as well as the general weakening of my heart and lungs and in general my immune system. As part of the varied treatment I received I was placed on large doses of oral cortisone, sometimes up to a 100mg a day. I remained on these doses for about 10 years as well as receiving large amounts of additional intravenous doses when I was hospitalised which sometimes would be 7 or 8 times a year.

I am now 37 and my heart and lung conditions seem to be stable though due to my prolonged use of cortisone I have developed Cushing’s-syndrome and adrenal insufficiency which means at this stage I cannot come off cortisone and thus still on a dose of 10mg a day. About 7 years ago I was diagnosed with Osteoporosis as a direct result of cortisone treatment and as we shall see it is thought that my AVN is a result of this treatment.

This concludes my introduction, my next post that will follow in a day or so will explain the start of my experience with AVN which has up to this point led to it being diagnosed in both shoulders my left hip and spine and has left me currently waiting for a date for my left shoulder replacement.



Last Updated on Tuesday, 24 March 2015 14:49