At first glance Macmillan Cancer Support may seem to be an odd choice for a recommended resource for Wegener's Disease. Cancer isn't even a form of vasculitis, never mind Wegener's Granulomatosis (GPA). Nevertheless, Macmillan holds a special place in my heart in relation to Wegener's.
That's because when Alicia was very ill, and the doctors were struggling to get the active phase of the disease under control, she was given such a battery of painkillers and drugs that she was severely ill and unconscious much of the time. Alicia was on a ward with many older people with terminal lung cancer and one day a Macmillan nurse noticed how ill Alicia was and asked if she could help.
That nurse was called Helen, and Alicia counts her as one of her friends to this day. Helen introduced Alicia to Dr Claud Regnard who worked with patients to control their pain in end of life care. Claud agreed to help Alicia and despite some dark days, he managed to restructure her pain medication so that she was able to cope with the disease, remain conscious and live some semblance of a normal life.
If you want to check what Macmillan resources are near you (assuming you like in the UK) you can visit this link.
Macmillan didn't just focus on the disease and the person with the disease - they were equally concerned for Alicia's family and how they were coping. They believed that a strong support network was vital to recovering successfully from a serious illness.
Macmillan are a registered charity and rely heavily upon donations to function. If you are interested in making a contribution, this is how you do it.