About
My Name is Gillian Eames l am 55 and have struggled with Ankylosing Spondylitis for over 20 years. l have raised two sons that l am very proud of as life was difficult for them growing up seeing me struggle to work and live with the constant unbearable pain of this disease.
I was medically retired 10 years ago from working which was hard to accept. This affected me physiologically as well as physically. At times the constant unbearable pain was hard to live with and at times l did not want to carry on living like this.
Five years ago l took part in a drugs trial through the clinical trial unit at The Royal National Hospital For Rheumatic Diseases in Bath.
The drug is an Anti-TNF called Etanercept of which I did a twice weekly injection.
Within a few weeks l started to feel so much better with reduced pain and stiffness. My mobility was improving as well. This drug was giving me back a better quality of life to what i was having before starting on Anti-Tnf
So the risks of taking part in this trial were beginning to be worth it along with the journey from Bromley in Kent to Bath in Somerset every month to be closely monitored and collect medication.
The drug is licenced and is being prescribed around the country to other sufferers in some health authorities.
The trial came to an end in July 2007 and Bromley Primary Care Trust are refusing to fund me to continue to stay on this drug.
l am fighting to win my rights as a human being to get their decision changed to keep the improved quality of life I have experienced in the last 5 years. l am very pleased that fellow sufferers around the country are being able to get access to this drug otherwise by helping to pioneer a drug that is to me a wonder drug would have been all for nothing. This drug is by no means a cure to this awful disease.
l have a petition on Downing Street and am asking for your support in signing it.
http://petitions.pm.gov.uk/ANTI-TNF/
An email will be sent back to you that must be activated for your name to appear on petition.
For more imformation on AS please go to
The National Ankylosing Spondylitis Society
www.nass.co.uk/news
Thank you for taking the time to join and read my story.
Gillian Eames
Thanks to your support l have won my battle to get funding to stay on drug but many others around the country have not
So please sign the petition to help them x
I was medically retired 10 years ago from working which was hard to accept. This affected me physiologically as well as physically. At times the constant unbearable pain was hard to live with and at times l did not want to carry on living like this.
Five years ago l took part in a drugs trial through the clinical trial unit at The Royal National Hospital For Rheumatic Diseases in Bath.
The drug is an Anti-TNF called Etanercept of which I did a twice weekly injection.
Within a few weeks l started to feel so much better with reduced pain and stiffness. My mobility was improving as well. This drug was giving me back a better quality of life to what i was having before starting on Anti-Tnf
So the risks of taking part in this trial were beginning to be worth it along with the journey from Bromley in Kent to Bath in Somerset every month to be closely monitored and collect medication.
The drug is licenced and is being prescribed around the country to other sufferers in some health authorities.
The trial came to an end in July 2007 and Bromley Primary Care Trust are refusing to fund me to continue to stay on this drug.
l am fighting to win my rights as a human being to get their decision changed to keep the improved quality of life I have experienced in the last 5 years. l am very pleased that fellow sufferers around the country are being able to get access to this drug otherwise by helping to pioneer a drug that is to me a wonder drug would have been all for nothing. This drug is by no means a cure to this awful disease.
l have a petition on Downing Street and am asking for your support in signing it.
http://petitions.pm.gov.uk/ANTI-TNF/
An email will be sent back to you that must be activated for your name to appear on petition.
For more imformation on AS please go to
The National Ankylosing Spondylitis Society
www.nass.co.uk/news
Thank you for taking the time to join and read my story.
Gillian Eames
Thanks to your support l have won my battle to get funding to stay on drug but many others around the country have not
So please sign the petition to help them x
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