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As Secretary of the Gauchers Association, I receive all kinds of telephone calls and letters from patients and their families in the UK and all over the world. It is extremely gratifying to be able to pass on up to date information and allay some of the worries that crop up, writes Susan Lewis:
Unfortunately a lot of wrong information is still around but what really makes me angry is that some patients, especially children, are encouraged to undergo painful and intrusive tests when they might not be necessary.
Even the routine procedure of taking blood from a vein in the arm or hand can be a frightening event for some people; and some don't get used to it no matter how often it's done. In fact it may get harder, both physically and psychologically.
One mother recently told me that, when her small son needs to have a blood test taken, the required blood is drawn out just before a Ceredase infusion through the same needle, so that he does not have to be bothered twice.
Liver and Bone Marrow Biopsies
I remember a conversation I had with an eminent doctor who wished to carry out routine liver biopsies. I know what a liver biopsy feels like - and it isn't nice. 'Oh, it's not painful,' said the doctor. I replied: 'Have you ever had one?' The answer was no. Maybe I was unfortunate that I took a week to recover from a simple test but somehow I don't think so.
A nine year old girl is still having routine liver biopsies. Her improvement or deterioration could be measured by a blood test just as easily and less painfully.
A mother recently telephoned to say her child had been diagnosed as having Gauchers disease and her other children were being tested - by extracting bone marrow, another painful procedure. Many doctors would now argue that in most cases diagnosis can be made by simply taking a blood test. Only in emergency or special instances need a bone marrow biopsy be used.
Liver and bone marrow biopsies are still used routinely by some physicians to diagnose and monitor treatment. As a layperson I question their necessity unless under special circumstances where less intrusive tests are not valid. In addition these biopsies may create increased risks to a patient.
Procedures May Hurt Or Be Frightening
Occasionally a procedure may be necessary but the person performing it may not have the required expertise or compassion. A teenager requiring weekly infusions of Ceredase through a portacath, was terrified if a particular nurse carried out the procedure. He was happy with another nurse and would have been content for one of his parents to insert the needle. Unfortunately sometimes the feelings of the person giving treatment takes precedence over those of the person receiving it.
Another patient has a needle inserted into her portacath at the beginning of every week so that three infusions during that week can be carried out. A needle could easily be inserted each time and there should be no need to walk around with a needle piercing her body all the time.
Even X-rays can be painful if a person suffering from bone damage has to lie on the hard metal bed to be photographed or pushed against the cold metal plate of the X-ray machine.
MRIs can be claustrophobic. One patient said he fell asleep while he lay in the white plastic tube. How he could snooze with a noise like a pneumatic drill going on, shows how good his mental powers were.
Less Pain, Not More
Some tests have to be carried out: blood tests, X-rays and other bone scanning tests. Sometimes ultrasound is used although without care this can press on a sensitive liver or spleen. Some tests are helpful to the patient, others aid the doctors' research. There is a difference. You might want to help in research but remember you have the right to say no, and have the right to ask for less intrusive monitoring. Gauchers disease causes enough pain without any additional discomfort inflicted which could be avoided.
Intrusive Tests - A Doctor Replies
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Source: Gauchers News March 1996.
© Copyright Gauchers Association 1996.