Weʼre raising £1,000 to help fund treatment for Rosey McNally who suffers with AVN
- Bradford UK
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'BfdBullsSG Would like to appeal to all 'Bradford Bulls fans', and also the RL community in general to help us support Rosey.
Gregg McNally (Ex Bulls) recently left our club due to personal reasons. Below is a transcript (copied directly from an email from Gregg's wife Rosey) giving an insight into her battle with AVN.
“In the summer of 2017 I went for an evening run where I had to return home early due to a pain in my leg which was somewhat unbearable. I visited the Dr' s & the walk in centre on numerous occasions where I was told a total of 9 times (on different occasions) the pain was down to muscle problems or a pull in it. After numerous visits I went back to my GP where she agreed to refer me to the MKATS team at Leigh infirmary (the muscular skeletal team) where I was to spend months under their care. During my time with them, they did tests on me to rule out certain things like ligament & muscle damage, all came back negative. Every result contradicted another as the pain would be in a completely separate place to where they was feeling and testing which completely baffled them and me. Because of this, they sent me for an MRI scan on my right leg, where it was found I had the disease Avascular Necrosis, an extremely complex disease that because of no blood getting to the joint, destroys the supporting bone and eventually kills it completely or in other terms, the bone collapses, so my patella bone is incredibly fragile and likely to shatter at any impact. It is also incredibly painful to the point of me having to take strong medication throughout any day as my bones are dying, I also use crutches and a leg brace to take the pressure off it. Every human being naturally creates and re creates bone, that's what we do, but without blood, the body can't, therefore I can't. The only known cure for this would be a knee replacement, however because of my age the professionals do not want to rush into this as I'd need at least a couple more and they want to try other options like a bone graph first which would have to be in December (this is what I was heading towards). I have had physio, numerous pain killers and tests on this leg, nothing can be done, there is no other fix for Avascular Necrosis, it destroys everything it touches (reminds me of the nothing from The Never Ending story!!) Sometimes, when caught early, Avascular Necrosis can go away, it almost always comes back again, but all mine have been diagnosed as the later stages of it.
I went into hospital (Salford Royal) in August as I was in a world of new pain that knocked me quite sick, going down my leg, I spent 2 days there where they ran tests on my hip bones as I could not lift my leg up at all which is unusual and shouldn't happen regardless of the AVN in my knee. This is a medical anomaly. They released me having found nothing new, just put it down to the AVN in my leg playing up. However, they called me back 2 days later, where they told me to come in immediately as they had some new findings which they actually diagnosed as me having fractured my femur bone. How? When? This was not the case. The Dr proceeded to tell me I have AVN throughout my pelvis, in both my hips. It looks like it has been there a while as my right hip bone is completely dead as well as the top of my femoral head completely destroyed and distorted (yours looks like a dog bone, mine looks like a sunk in tea cup). My left side is not as bad where they wanted to operate asap to save it which includes drilling a hole in my bone, using my stem cells and bone marrow to strengthen it, this would put me in a wheelchair for 6 months to recover as I cannot put pressure on the right side which is completely irreparable. Due to the mass complication involved in a Core Decompression operation and the success rate which I was not notified of (About 60%) I have chosen not to have this operation. I have heard about it failing too many people, it can actually fail within 2 days of recovery and puts you in a world of pain, and more than likely I would need a replacement within 2 years anyway. So the bone would fail and collapse anyway, regardless of this tough and extreme operation. To totally fix me for now, and be rid of the AVN I currently have (I am having symptoms in other joints and this disease can affect every and all joints- I have met someone who has it in 22 joints!) I would need 2 new hips and 1 new knee, a possible metal plate to fix my femoral head and a world of recovery time. Drs I have seen, and I have seen a lot on the NHS don't want to give me these replacements because of my age and by their standards, I will not be walking when I am 60. I have thought about this massively and after considering all the options I can safely say I would have these operations now to have my life now. I have 2 wonderful children who are 5 & 6, they need their Mum now, not then when they are adults themselves. Also, getting the replacements would immediately stop my pain, meaning my quality of life would immediately improve. Me and my family have accepted that we have to go through private care, this disease is incredibly rare so I have met Drs who have studied years and who have never seen this. It has been a very frustrating and slow journey throughout and I have often found myself in A&E numerous times telling them I am in so much pain, fainting because of the pain, and they tell me it's muscular because they do not understand or have not seen it before and that has happened more times than I can count on one hand. Not only does this disease cause pain, I recently found out it effects your immune system, as your body is trying to re create bone it just takes all your nutrients for that, leaving you tired, poorly and sometimes unable to move, this is something I researched myself. I have joined numerous support groups and Facebook groups to learn about my disease because Drs cannot tell me the facts.
One facebook group and website I found was the AVN Charity UK. A charity made up of people who suffer from AVN but who do not want to allow people to suffer alone. This charity made up of a small number of 700 people, does not have enough turn over (5,000) to be a registered charity. I made a decision when I found out about my hips. That I want to help people like me, or even people who just need support and someone to talk to who is like minded. I want to help all those who suffer with AVN, that they do not suffer alone. I organised a charity walk based in my home town of Leigh, where we walked along a bus route to a play centre I used to work in. There we had buns and cakes on offer, all made by the wonderful public, family and friends. We raised over £1,300 on that day for the charity. Helping others always helps me get out of myself, helps me get up and remember that there are people far worse off than me in this situation. I have an amazing family, husband and friends network, not everyone has that. I have recently been made a trustee of the charity where I plan to help as much as I can whilst I can. It is an absolute honour. AVN has changed my life. But it has also taught me to love harder, appreciate everyone and every little thing in your life and quite simply, enjoy as much as you can.
Recently, I met a private Dr who has seen AVN before. He took one look at my X-Ray and said I need a hip replacement immediately. Usually it takes an MRI to show how bad the AVN is, he only needed to see the X-Ray of my right hip to know. He said left untreated I could end up with a complex replacement or even worse, become inoperable. He said I could have this done on the NHS but I could be waiting 6 months as he'd tell them I need it asap. Private care will allow me to get the op and all other treatments I need now, but obviously at a huge cost. This has only enhanced my frustration at the NHS for allowing me to get this bad, and also allowing me to believe I didn't need an op right now. This is happening to people all over with AVN because they simply do not understand the severity of it. That, and a young person needing lots of replacements is quite a costly aspect. I understand the NHS for wanting to try everything before a replacement, but I haven't been given options. I have been told what to do and had to research everything myself. Our wonderful NHS is meant for choices, when all parties are fully aware and informed of options, then a decision is made. My family have recently started organising fund raisers and amazing charity events. I believe there are people far worse off than me, I never wanted to become a charity myself, I wanted to help everyone else, but this is my family and friends choice and they have some really amazing ideas and fun family ideas! For example, the bones ball, which will include prizes, best dressed, auctions and raffles, to swap shops, where people pay a small price for a ticket to come and re vamp their wardrobe! We have been humbled and amazed at the support and well wishes given by people. I aim to put AVN under the spot light, to help others who not only currently suffer, but who have symptoms and don't know what to do about it. I have opted to put my personal number on the AVN charity site as I want to help everyone I can in this.
AVN may be killing my bones slowly, but it has certainly taken no effect on my spirit, empathy or need and want to help others!”.
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Mar 19, 2019
Hope you get your surgery soon, Rosie.
Feb 27, 2019
Hope this helps
Feb 23, 2019
Feb 22, 2019
Get well soon RoseyThoughts are with you and your family x
Feb 21, 2019
Hope you can get sorted quickly. Our thoughts are with you and your family
Feb 21, 2019
Really hope the treatment is possible and soon xx
Feb 21, 2019
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Bradford Bulls Supporters Group would very much like to support Rosey All donations as fellow RL supporters will go towards her treatment. Regards, /BfdBullsSG.