Patients’ Stories

James’ Story

I have been fortunate through Dr D’Cruz’s expert care and his full appreciation of the long-term tenure of this condition to be able tofollow a relatively normal life. I am very proud to have founded the Wegener’s Trust with him. The need for it has become evident almost immediately. With so many people investing so much of their time and energy into it, I strongly believe this Trust is going to make a real difference in the understanding of this elusive condition and in funding meaningful targeted research. We desperately need to get more timely diagnosis of Wegener’s and a more effective treatment. The rare nature of the condition has meant this research is long overdue and your donations will matter greatly.     … Read James’ story

James’ wife Antonia, mother of four, the least athletic person on the planet, somehow got to get herself to the point where she can run a marathon. On 17th April 2011, she completed the London Marathon, raising £20,000 for the Wegener’s Trust.   … Read on

David Britten’s Story, by his wife Tricia

The St Thomas’ Wegener’s Trust has been formed to raise awareness of the disease and to raise funds for desperately needed research.  Perhaps, if there was more known about this illness, David would still be here with us today.       … Read David’s story

On Sunday 13th June 2010, David’s family abseiled down the 469ft Guy’s Hospital Tower, raising an impressive £7,000 for the Wegener’s Trust in memory of David   … Read on

Derek’s Story

As you will have seen, I had a very difficult start at the beginning of all this, but thanks to the wonderful skill of the consultants and doctors that have looked after me since December 2001 I have had the best possible chance that anyone could have given me. I am living proof of that, and long may it continue!   … Read Derek’s story

Billy Newton’s Story, by his son Paul

And so the story went on for the next 12 or more years.  My Dad had arthritis, he got tired easily, but he lived with it and his painkiller kept him able to function.   In fact, it was only about 3 months before he died that we ever heard the words Wegener’s Granulomatosis mentioned.  He kept it from us.  We have no idea when he was diagnosed, because he didn’t want us to worry, he didn’t want us to fuss and he certainly didn’t want us to share his pain.  … Read Billy’s story

Over the 13th, 14th and 15th May 2011, Paul and his friends, backed by an amazing group of volunteers played 5-a-side football for 40 hours getting themselves into the Guinness Book of Records. They raised just a shade under £15,000 for the Wegener’s Trust in memory of Paul’s dad Billy Newton   … Read on

Dr Elisabeth Fender’s Story, by her daughter Anna

Elisabeth (Buffy to her friends) had a horrible illness called Vasculitis which is a disease that manifests itself in different ways according to each sufferer. This makes it very difficult to treat and specialists are few and far between. She suffered terribly from this illness and the side effects its treatment for 30 years. Last summer she died. … Read Elisabeth’s story

On June 4th 2011, Anna and a large group of friends and family ran 5k to raise £6,000 for The Wegener’s Trust in memory of a wonderful woman, Dr Elisabeth Fender.

Gary’s Story

My name is Gary, I am 57 years old and in 2010 after what seemed like a lifetime of illness I was diagnosed with Wegener’s granulomatosis…I have now improved considerably and have returned to work full time.  I am still under the care of Dr Gibson and the brilliant Wegener’s team at St Thomas’s hospital and I have regular check-ups every 6 months, I am happy to say after all that I am still living a full and happy life with my wonderful family. Read Gary’s Story

Nigel’s Story, by his wife Pauline

All the many doctors we saw agreed Nigel’s case was unusual, maybe even unique, and was complicated by him having more than one serious condition.  This undoubtedly was a major factor in the delay in diagnosis.  Fortunately most Wegener’s sufferers will enjoy a better outcome than Nigel.  However, further research and publicity are both vital to early diagnosis and effective treatment; even more importantly, we hope that research will pinpoint what causes it and how it may be cured and even prevented.  All who knew Nigel and the remarkable courage he showed in the face of terrible adversity wish to support the Wegener’s Trust in any way we can.  Nigel himself wished that in studying his illness, doctors would learn more and disseminate that information so that his legacy would give hope to other sufferers. …Read Nigel’s story