Judith’s Story
I’m Judith’s husband, and thought I should write our story in the light of reading some recent emails from new patients. I will keep it as short as possible, as I can be long winded on the subject!
Judith was sent by her GP to a local dermatologist, Dr. Peter Coburn. He told her that he thought the diagnosis was Degos disease, but would take a biopsy to verify.
The diagnosis meant nothing to us. Unfortunately, Judith looked it up on the internet, and death was the only prognosis.
Three weeks later, Dr. Coburn phoned Judith at school (she was teaching), she went to him immediately, and he confirmed the diagnosis.
He also had made an appointment for Judith to see Dr. Robin Russell-Jones, the top physician in the UK.
The following day in London, the first question Dr. Russell-Jones asked us if we had researched it on the internet. He then told us not to believe it. He believed a large proportion of patients survived. (He has been proven correct.)
However he knew nothing of the cause, nor a cure for the disease. However Judith agreed to accept trial treatment. Over the next two years Judith was treated on the assumption that the illness was immune related.
During this period two important things occurred to us:
We changed GP’s. Our original GP felt he couldn't help us.
The new GP was, and is, wonderful. On my first meeting he said he would be the doctor to see that Judith leads a normal life. He also put Judith on anti-depressants (this made a huge difference to Judith and to me!)
2. Judith started a website to find other patients and provide support.
Sadly, the treatments being prescribed for Judith didn’t work. She became ill on various fronts (MRSA twice!), but especially when the lesions became ulcerated.
Dr. Russell-Jones finally told us that he had exhausted all conventional treatment. We have no complaints about this.
By one of these strange twists of fate, within a week of Judith’s leaving Dr. Russell-Jones, the father of a patient in Germany wrote to say that he had read an article by a German professor saying he had cured the disease.
We took the email to our GP who phoned the professor (he hadn’t cured it–he had treated one patient who was still alive).
Four days later we were at the University Hospital in Berlin. To cut the wonderful story short Professor Zouboulis was appointed to look after Judith and was granted funds to research the disease. I wept when he told me this.
And so Judith set up a partnership with Professor Zouboulis. Her role was to find patients as we need patients to do research and he does the research. (Well, Dr. Theodoridis does the work as the assistant!).
So from our perspective, new patients are good news, but for the patients it is, of course worrying.
Judith herself suffered terribly from ulcers on her feet and had to be treated daily at home by nurses (she was in great pain and on morphine). She of course had to retire—as did I—to help.
Then another miracle happened, when Dr. Coburn thought we might have to amputate a foot, Judith suggested to the nurse that she try a particular brand of honey to treat the ulcers. With nothing to lose the nurse did so.
Two weeks later, her wounds were healed! The nurse returned to university and wrote a thesis on the application of Manuka honey to ulcers. It is standard practice now in the UK.
Back to Degos, Judith and Prof. Zouboulis organized a conference on the disease in Berlin. We attended with patients from different parts of the world (mostly America).
Among those attending was a mother from Boston whose 5 year old had died. Dr. Patrick Whelan was the child’s attending doctor.
Subsequently, a further conference was held in Boston.
So information is building up. My advice to people who have just been diagnosed is the same as that given to us by Robin Russell Jones. Most people survive.
Our GP is Dr. Charles Shlosberg. I called him at 2.00am one night when Judith was in great pain, He came round immediately. Whilst administering morphine he asked Judith a simple question. What is the difference between God and a doctor? Answer: God does not think he is a doctor. For those who have unsympathetic doctors – ditch them.
I have of course met Dr. Coburn, Dr. Whelan, Dr. Theodoridis, Dr. Russell-Jones, Dr. Shlosberg, and Prof. Zouboulis.They are caring and wonderful people.
If you were to meet Judtih today, you would never know what she had been through. But she corresponds regularly with many people, and she has met more patients than anyone alive.
If you feel lonely please contact Judith or me. We know what it is like.
Judith’s Husband
I moved into this district nursing post in September 2001 and ‘inherited’ Judith who was already on the caseload of the previous district nurse. The first thing that struck me as being unusual was that we were going in daily to dress wounds on her feet that we would normally only dress once or twice a week.
I seem to remember trying to cut the visits down to every other day but no matter what we put on, they always stuck if we left the dressings on any longer than for a day, and this meant that Judith experienced excruciating pain. It became obvious that these wounds were not ‘normal’.
I was informed from the beginning that the disease was classified as terminal and that there is not yet a cure. Therefore, another reason for our visits was to support Judith through her illness.
Judith often looks very well and it is very difficult to think of her as seriously ill. Because of this, when her ulcers were almost healed last year, Judith was dressing them herself and we withdrew. However, the ulcers did not heal and Judith called us in for advice.
When I visited, treatment for the ulcers was discussed but I was surprised to find how desperate Judith had become before seeking help, and I realised how valuable the support visits had been for Judiths mental health.
She told me how isolated she had felt at times, how she didn’t like to ring up and ‘bother’ anyone and how low she became sometimes on hearing of the loss of others with the same disease. I decided at this time that we would recommence regular visits and continue them even if Judith had no physical nursing needs.
Through visiting regularly, I feel that our district nursing team has a good understanding of, and empathy for Judith. We have watched her going through almost unbearable pain (and treatment for it which was sometimes as bad as the pain itself). As there seems to be no set pattern for the progression of Degos disease, sufferers do not know what the future has in store.
Judith tries to put this from her mind and is always available to listen to others problems and help where she can. When Judith asked me to write this, we reflected on the fact that unless sufferers had physical nursing needs, they would probably not have contact with a district nurse.
We haven’t known anyone else with this disease and so are not sure that we’re doing the ‘right thing’ but are willing to learn with Judith.
She is always a pleasure to visit and I hope that our visits and our liaison with her GP make some contribution to improving her quality of life.